Tick Boot Camp

1. Episode 630: Reaching Recovery: Lyme Disease Healing, Herbs, Nervous System Support & the Long Game

   14.11.20261 Std. 23 Min.Staffel 1 · Folge 630Als Nächstes

   Read transcriptThis episode is a little different from a typical Tick Boot Camp Podcast interview. Matt Sabatello and Rich Johannsen joined Liza from Vital Plan for a live community event titled “Reaching …

   Shownotes

   Read transcript

   This episode is a little different from a typical Tick Boot Camp Podcast interview. Matt Sabatello and Rich Johannsen joined Liza from Vital Plan for a live community event titled “Reaching Recovery: What It Takes to Get There and Stay There,” originally presented as part of Vital Plan’s Cellular Healing Bootcamp.

   In this candid conversation, Matt shares the story of going from an extremely active long-distance runner to being bedbound with severe neurological symptoms, seizures, cognitive dysfunction, chronic pain, and profound fear about his future. He explains how his recovery unfolded gradually over several years and how community, belief, nervous system support, herbal medicine, movement, lifestyle changes, and learning from hundreds of Tick Boot Camp guests helped him rebuild his life.

   Rich shares what it was like to watch Matt’s transformation firsthand and reflects on the patterns he has observed after more than 600 interviews with people navigating Lyme disease, tick-borne illness, chronic illness, and recovery.

   A major focus of the discussion is Matt and Rich’s experience with Dr. Bill Rawls’ herbal approach and Vital Plan, including Restore180, HPA Balance, nervous system regulation, gut support, movement, sleep, stress management, and what long-term maintenance can look like after significant recovery.

   Matt also tells a deeply personal story he had never publicly shared before: while hospitalized and extremely ill, his mother and grandmother were praying for him when the giant word “HEALED” appeared on the television in his hospital room. At the time, Matt did not believe recovery was possible. Years later, connecting with people through Tick Boot Camp who had regained their health helped him slowly replace fear and doubt with hope.

   In This Episode

   Matt and Rich discuss:

   • Matt’s progression from early exercise-induced symptoms to being completely bedbound
   • Seizures, neurological symptoms, hallucinations, vision problems, chronic pain, and cognitive dysfunction
   • Matt’s Lyme disease diagnosis and his personal experience with IV antibiotics
   • Why recovery continued long after his initial antibiotic treatment
   • The fear of trying new treatments when you are already extremely sick
   • Starting slowly with herbs and gradually building tolerance
   • Matt’s experience with Vital Plan’s Restore Kit, now part of Restore180
   • HPA Balance and the role Matt and Rich say it played in stress regulation and sleep
   • How fear, hypervigilance, and the nervous system can become part of the chronic illness experience
   • Why Matt believes community was essential to rebuilding hope
   • Rich’s perspective on moving gradually from doubt toward belief that recovery is possible
   • What it means to be “healed” or “recovered” when nobody feels perfect every day
   • Going from being unable to participate consistently in the podcast to working full time, exercising, traveling, attending events, and living an active life
   • Matt’s gradual return to walking and eventually running again
   • The difference between active treatment and long-term maintenance
   • Matt and Rich’s current approach to herbs and supplements
   • Diet, sleep, stress management, movement, boundaries, and nervous system support
   • How Matt handles demanding days without immediately fearing a major relapse
   • Why setbacks do not necessarily mean starting over
   • The importance of listening to your body and adjusting over time
   • Restore180 and Vital Plan’s approach to long-term herbal support
   • Questions from the live audience about body buzzing, leg pain, sleep, tinnitus, Lyme testing, herbs, and maintenance
   • Matt’s personal experience with changing autoimmune-related laboratory markers during his recovery
   • Why Matt and Rich emphasize agency, education, community, and hope

   Matt’s Recovery Philosophy

   One of the central themes of this conversation is that Matt’s recovery did not happen overnight.

   There was no single morning when he woke up and suddenly declared himself healed.

   Instead, progress happened gradually.

   He began showing up for more Tick Boot Camp interviews. He started walking farther. His cognitive function improved. He returned to a demanding professional career. Eventually, he was able to exercise and run again.

   And at some point, Lyme disease was no longer the center of his daily life.

   For Matt, that became an important part of what recovery means.

   Herbs, Restore180 & Dr. Bill Rawls

   Matt and Rich also share their personal experiences with the herbal protocols developed by Dr. Bill Rawls.

   Matt describes beginning extremely cautiously because he was afraid of triggering a setback. Rather than rapidly starting a full protocol, he gradually introduced herbs over several months and paid close attention to how his body responded.

   The conversation explores the idea that herbal medicine may be approached not only through the lens of targeting microbes, but also through supporting broader aspects of wellness such as stress response, sleep, cellular health, gut health, and immune function.

   Learn more about Vital Plan’s Restore180 program:

   Explore Restore180 from Vital Plan

   Watch the Original Vital Plan Community Event

   This conversation was originally recorded live for the Vital Plan community as part of its Cellular Healing Bootcamp.

   View the Reaching Recovery event page

   More with Dr. Bill Rawls on Tick Boot Camp

   Dr. Bill Rawls was one of the earliest guests on the Tick Boot Camp Podcast and has returned for multiple conversations covering Lyme disease, herbal medicine, cellular wellness, chronic illness, immune health, and recovery.

   Explore all Tick Boot Camp interviews with Dr. Bill Rawls

   A Message for Anyone Still in the Thick of It

   One of the strongest themes of this live conversation is that recovery can be gradual, nonlinear, and difficult to recognize while it is happening.

   Matt went from being unable to walk to the bathroom safely to working full time, exercising, traveling, attending Lyme community events, producing Tick Boot Camp, and living a life he once could not imagine.

   The message from Matt and Rich is simple: keep learning, keep making thoughtful decisions, surround yourself with people who give you hope, and do not let a difficult day convince you that progress is impossible.

   Sometimes recovery begins by doubting the possibility of healing just a little bit less.

   Learn more about Lyme disease, recovery stories, doctors, researchers, and hundreds of patient journeys at Tick Boot Camp.

   Transkript

2. Episode 629: Lyme Disease Ended His Basketball Dreams. Now He's Helping Patients With AI – Carter Bradsky | LIVE from ILADS

   14.11.202610 Min.Staffel 1 · Folge 629Als Nächstes

   He was preparing to play college basketball when Lyme disease changed everything. Now he's using artificial intelligence to help other patients navigate the journey he wishes he never had to face alone. In this …

   Shownotes

   He was preparing to play college basketball when Lyme disease changed everything. Now he's using artificial intelligence to help other patients navigate the journey he wishes he never had to face alone.

   In this LIVE from ILADS episode of the Tick Boot Camp Podcast, co-host Rich Johannesen sits down with Carter Bradsky, Lyme disease survivor and co-founder of LymeLess Health, to discuss how a devastating family experience with Lyme disease, Bartonella, and Babesia inspired an innovative patient-built healthcare platform.

   Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation explores the challenges of living with chronic illness as a young adult, losing athletic opportunities, navigating college with debilitating brain fog, and struggling to find reliable information and community support.

   Carter shares how his mother's prolonged search for a Lyme disease diagnosis helped his family recognize his own symptoms and connect with a healthcare provider.

   After approximately two and a half years of treatment and recovery, Carter and his sister, Payton Bradsky, decided to build something they wish had existed during their own illnesses.

   The result is LymeLess Health, an AI-powered care management platform designed specifically for people navigating Lyme disease and associated tick-borne infections.

   Their mission is to make the Lyme disease journey less isolating, less confusing, and more manageable by bringing together patient experiences, health information, educational resources, and technology.

   What if patients didn't have to spend years searching for the information, support, and guidance that others have already discovered through their own experiences?

   That's the question driving Carter and Payton's work.

   Episode 576: Can AI Transform Lyme Disease Care? Carter & Payton Bradsky of LymeLess

   A Family's Journey Through Lyme Disease

   Carter explains that his family's experience with Lyme disease began approximately a decade before this interview.

   His mother developed debilitating symptoms while living in Arizona and spent years searching for an explanation.

   According to Carter, she underwent more than 100 medical tests and encountered multiple physicians before receiving a diagnosis.

   During that time, she experienced medical dismissal and was told that her symptoms might be psychological.

   At one point, multiple sclerosis was considered as a possible explanation.

   A chance conversation with the mother of one of Carter's high school friends—who was a naturopathic provider familiar with Lyme disease—encouraged the family to investigate tick-borne illness.

   That encounter eventually helped his mother connect with a physician who diagnosed and treated her.

   Carter emphasizes how much luck played a role in his mother's journey.

   Without that unexpected connection, he wonders how much longer she might have continued searching for answers.

   Her experience would later become critically important when Carter developed symptoms of his own.

   From Competitive Basketball to Debilitating Brain Fog

   As a high school senior in South Dakota, Carter was preparing for an exciting transition.

   He was graduating, heading to college, and had an opportunity to play competitive basketball at the university level.

   Basketball had been an important part of his identity.

   Then his health began to deteriorate.

   Carter describes developing symptoms that included:

   • Severe brain fog
   • Memory loss
   • Dissociation
   • Anxiety
   • Difficulty concentrating
   • Cognitive challenges affecting academic performance
   • Fear and physical discomfort associated with athletic activity

   He remembers going from feeling confident and engaged on the basketball court to experiencing anxiety about returning to play.

   The sport that had once brought him tremendous happiness became something he could no longer participate in.

   Because his mother had already experienced Lyme disease, she recognized similarities in his symptoms and encouraged him to seek evaluation.

   They traveled to Northern California to see the physician who had helped her.

   Carter reports that Bartonella and Babesia were identified as significant components of his illness.

   He describes undergoing approximately two and a half years of treatment involving antibiotics, herbal support, and other interventions before regaining his health.

   His treatment experience is personal testimony, not evidence that the same regimen is appropriate or effective for every patient.

   Losing the College Experience to Chronic Illness

   One of the most emotional parts of the conversation centers on what Lyme disease took away from Carter during college.

   He explains that he had to abandon competitive athletics.

   But the loss extended far beyond basketball.

   While classmates were enjoying college life, making friends, attending social events, and pursuing academic goals, Carter was struggling simply to get through the day.

   He recalls attending philosophy classes and being unable to remember assigned reading.

   When professors called on him, he sometimes struggled to answer questions because of his cognitive symptoms.

   He describes feeling embarrassed, isolated, and disconnected from the experiences his peers were having.

   Instead of enjoying a typical college social life, Carter focused on three priorities:

   Getting through class, spending time at church, and sleeping.

   His academic goal shifted from excelling to simply being able to complete his coursework.

   For a young adult who had previously been active, confident, and competitive, the experience was deeply challenging.

   Carter explains that he did not know where to find Lyme disease support groups, educational resources, or organizations such as ILADS.

   He felt as though he were navigating an overwhelming illness without a community that understood what he was experiencing.

   That isolation eventually became one of the primary problems he wanted LymeLess to address.

   The Hidden Burden of Managing Lyme Disease Treatment

   Carter also discusses the practical challenges of managing complex treatment plans while attending college.

   He remembers trying to organize numerous medications and supplements while keeping his illness private.

   For patients managing multiple prescriptions, supplements, appointments, and changing symptoms, the organizational burden can become substantial.

   Carter describes the experience of having a kitchen counter filled with bottles and trying to remember what to take and when.

   At the same time, he was struggling with brain fog and memory difficulties.

   The very symptoms he was experiencing made managing his care more difficult.

   He also recalls uncertainty about whether his treatments were helping and whether he was making the right decisions.

   Questions frequently occupied his thoughts:

   • Am I receiving the right care?
   • Are these treatments helping?
   • What should I do next?
   • Are other patients experiencing similar symptoms?
   • Where can I find reliable information?
   • Will I ever get better?

   These challenges helped shape his vision for a technology platform that could support patients with organization, education, and care navigation.

   Meet LymeLess Health: Built by Patients, for Patients

   After Carter and Payton experienced their own Lyme disease journeys, they began discussing how technology could help address problems they had encountered.

   They founded LymeLess Health, a patient-centered platform focused on Lyme disease and associated tick-borne infections, which the company collectively refers to as Lyme+.

   Their goal is to help patients manage the complexity of chronic illness by bringing important information into one place.

   During the interview, Carter describes the platform as a personalized AI companion informed by Lyme-related educational resources, individual health information, and insights from the patient community.

   Rather than requiring patients to search across multiple websites, social media groups, medical records, and personal notes, LymeLess aims to make relevant information easier to organize and access.

   The company's philosophy is rooted in a simple idea:

   Patients should not have to rely on luck to find helpful information and support.

   Carter and Payton want to use technology to make the experiences and knowledge accumulated throughout the Lyme disease community more accessible to others.

   Learn more about LymeLess Health and its mission.

   Meet Ella: An AI Companion for Lyme Disease Patients

   At the center of LymeLess is Ella, an AI-powered companion designed to help people navigate Lyme disease and complex treatment journeys.

   Carter describes the concept as creating a digital resource that could provide some of the organizational and informational support his mother offered him during his illness.

   The platform is designed to help patients better understand their own health experiences while preparing for conversations with healthcare professionals.

   LymeLess describes capabilities involving:

   Symptom and Treatment Tracking

   Patients can record symptoms, treatments, and changes in how they feel over time.

   Tracking this information may help individuals identify patterns worth discussing with their healthcare providers.

   Organizing Medical Information

   The platform is designed to bring medical history, treatment details, and other health information into a more accessible format.

   This may be particularly useful for patients who struggle with brain fog, memory difficulties, or extensive medical records.

   Educational Support

   Ella provides access to Lyme-related information and resources intended to help patients become more informed about their conditions.

   Preparing for Medical Appointments

   By organizing symptoms, treatment histories, and questions, patients may be better prepared to communicate with their healthcare professionals.

   Learning From Community Experiences

   LymeLess aims to use aggregated patient experiences to help identify patterns and provide additional context for people navigating similar challenges.

   The company hopes this approach will eventually support more personalized care and research.

   These are platform capabilities and goals described by LymeLess, not independently established evidence that AI can identify effective treatments or improve clinical outcomes.

   Ella is a care management and educational tool, not a replacement for a licensed healthcare professional.

   Can Artificial Intelligence Help Patients Navigate Lyme Disease?

   Rich and Carter discuss how artificial intelligence could change the way patients access information.

   Many people with Lyme disease spend substantial time researching symptoms, comparing treatment experiences, looking for specialists, and searching online communities for answers.

   This process can become exhausting, especially for patients experiencing cognitive difficulties.

   Carter believes AI may help reduce that burden by organizing information and making relevant resources easier to find.

   He describes a future in which patients can draw on educational materials, personal health data, and insights from people with similar experiences.

   The goal is not to replace medical judgment but to help patients arrive at appointments better informed and prepared.

   AI-generated health information can still be incomplete or inaccurate, and patient experiences do not establish whether a treatment is safe or effective.

   Treatment decisions should remain grounded in appropriate medical evaluation and discussions with qualified healthcare professionals.

   Learning From the Lyme Disease Community

   One of Carter's most ambitious goals involves the collective knowledge of the Lyme disease community.

   He explains that patients frequently discover useful resources only after spending months or years searching.

   Some find organizations, physicians, research, or support networks through chance encounters.

   Others learn about potential treatment approaches through conversations with fellow patients.

   Carter wants LymeLess to help people access relevant information earlier in their journeys.

   He also believes that patient-reported experiences could eventually contribute to a better understanding of complex chronic illness.

   By organizing information across many patients, the company hopes to identify patterns that could inform future research and care navigation.

   This approach raises important questions about data quality, privacy, consent, and how patient-reported outcomes should be interpreted.

   But it also reflects a growing interest in involving patients more directly in healthcare innovation.

   People living with chronic illness have valuable experiences that deserve to inform research, technology development, and healthcare conversations.

   Making Lyme Disease Support More Accessible

   During the interview, Carter explains that LymeLess had recently moved from private beta testing into an open beta phase.

   He describes spending approximately 18 months speaking with patients, clinicians, and organizations, including members of ILADS and the Lyme Clinical Trials Network, to better understand what patients needed.

   The platform was designed with accessibility and affordability in mind.

   Carter discusses a subscription model, scholarship opportunities, and the longer-term goal of obtaining insurance coverage for services like LymeLess.

   He recognizes that many people with complex chronic illness already face substantial financial burdens.

   The company's goal is to make supportive technology available to as many patients as possible.

   Since this interview, LymeLess has continued developing its platform. Its current website and app listings provide information about availability, features, and subscription options.

   Explore the LymeLess Health website or find the app through the Apple App Store and Google Play.

   A Potential Collaboration With Tick Boot Camp

   During the interview, Rich expresses enthusiasm for Carter and Payton's work.

   He recognizes the similarities between the mission of LymeLess and Tick Boot Camp's commitment to educating and empowering people affected by Lyme disease.

   Rich discusses how Tick Boot Camp has built an extensive library of interviews featuring patients, physicians, researchers, advocates, and other members of the Lyme disease community.

   He suggests that this educational content could potentially contribute to the resources available through LymeLess.

   Carter welcomes the idea of exploring collaboration and explains that partnerships with trusted voices in the Lyme community are important to the company's mission.

   The discussion is exploratory; no formal partnership is announced during the interview.

   Rich also invites Carter and Payton to return for a longer Tick Boot Camp interview to explore their experiences and technology in greater depth.

   Their conversation highlights a shared belief that access to information, community, and patient experiences can help people feel less alone while navigating illness.

   From Lyme Disease Patient to Healthcare Entrepreneur

   Perhaps the most inspiring part of Carter's story is how his perspective changed after recovering.

   He explains that losing basketball and struggling through college were painful experiences.

   But those challenges also gave him a new sense of purpose.

   He and Payton began thinking about how they could use their experiences to help others avoid similar difficulties.

   Rather than allowing their illnesses to define their futures, they decided to build something for the community.

   Carter's experience also illustrates the importance of family support.

   His mother's persistence helped him recognize his symptoms and access medical care.

   Today, he wants LymeLess to offer some of that same sense of support and direction to patients who may not have someone in their lives with similar knowledge or experience.

   His story is a reminder that healing is possible, and the experiences of people who have lived through Lyme disease can become powerful tools for helping others.

   Key Takeaways From Carter Bradsky

   1. Lyme disease can affect entire families. Carter's mother, Carter, and his sister Payton all experienced significant health challenges.
   2. Medical dismissal can delay answers. Carter describes his mother's lengthy diagnostic journey and the importance of finding a provider who considered tick-borne illness.
   3. Lyme disease can disrupt major life milestones. Carter lost the opportunity to play competitive college basketball and struggled academically and socially.
   4. Brain fog and cognitive symptoms can be debilitating. Memory loss and concentration difficulties affected his ability to participate in college life.
   5. Chronic illness can be profoundly isolating. Carter remembers feeling disconnected from classmates and unaware of available support resources.
   6. Treatment management can become overwhelming. Organizing medications, supplements, appointments, and symptoms adds another burden to patients already feeling unwell.
   7. Family and community support matter. Carter credits his mother's experience and guidance with helping him navigate his illness.
   8. Patient experiences can inspire innovation. Carter and Payton created LymeLess to address challenges they personally encountered.
   9. AI may help organize complex health information. LymeLess aims to support symptom tracking, education, and preparation for medical appointments.
   10. Technology should support—not replace—medical care. AI-generated insights require appropriate clinical interpretation.
   11. Affordability is an important part of access. LymeLess is exploring ways to reduce barriers for patients who need support.
   12. Recovery can create new purpose. Carter transformed a difficult personal experience into a mission to help the Lyme disease community.

   Resources Mentioned in This Episode

   LymeLess Health

   • LymeLess Health – Official Website
   • Meet Carter and Payton Bradsky – The LymeLess Story
   • LymeLess Health on the Apple App Store
   • <a href="ht

3. Episode 628: Can Ozempic Help MCAS and Chronic Lyme? Dr. Tania Dempsey's New Research | LIVE from ILADS

   13.11.202617 Min.Staffel 1 · Folge 628Als Nächstes

   Could medications best known for weight loss and diabetes offer a new way to manage mast cell activation syndrome (MCAS), inflammation, and symptoms experienced by some patients with chronic Lyme disease? In …

   Shownotes

   Could medications best known for weight loss and diabetes offer a new way to manage mast cell activation syndrome (MCAS), inflammation, and symptoms experienced by some patients with chronic Lyme disease?

   In this LIVE from ILADS episode of the Tick Boot Camp Podcast, co-host Rich Johannesen reunites with Dr. Tania Dempsey, MD, a physician specializing in complex chronic illness, mast cell activation syndrome, and tick-borne diseases, for an exciting discussion about emerging research into GLP-1 medications and immune system dysfunction.

   Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation centers on Dr. Dempsey's recently published research investigating GLP-1 receptor agonists—medications such as Ozempic, Wegovy, Mounjaro, and Zepbound—as potential treatments for patients with MCAS.

   Dr. Dempsey discusses a 47-patient case series in which 87% of participants reportedly experienced a positive response to GLP-1-based treatment. She explains why these medications may have effects beyond blood sugar regulation and weight management, including potential influences on mast cell activity and inflammation.

   The interview also explores how mast cell dysfunction may interact with other components of the immune system, why Dr. Dempsey questions relying exclusively on antibody testing when evaluating certain complex patients, and how emerging molecular diagnostic methods could influence the future of tick-borne disease care.

   Throughout the conversation, Dr. Dempsey emphasizes the importance of individualized treatment, continuing research, and helping both patients and healthcare professionals better understand complicated chronic illnesses.

   Could GLP-1 medications represent a new direction in MCAS research? And what might that mean for patients living with Lyme disease, Bartonella, and overlapping inflammatory symptoms?

   This episode explores those questions while distinguishing promising early clinical observations from treatments that have been conclusively established through larger controlled studies.

   Meet Dr. Tania Dempsey, MD: MCAS and Complex Chronic Illness

   Dr. Tania Dempsey is a physician known for her clinical work with patients experiencing mast cell activation syndrome, Lyme disease, tick-borne infections, and other complex chronic conditions.

   Her interests include the relationship between immune system dysfunction, inflammation, environmental exposures, and persistent symptoms.

   Dr. Dempsey has become an increasingly prominent voice in discussions about MCAS and its potential relationship with other chronic illnesses.

   During this interview, she shares how appearing on major podcasts, including Dave Asprey's podcast, has helped her reach a broader audience.

   She explains that although she loves working directly with patients, her larger mission is to share information with healthcare professionals and patients around the world.

   Dr. Dempsey also discusses her involvement with the International Lyme and Associated Diseases Society (ILADS).

   At the time of this interview, she had served on the ILADS Board of Directors for two years and had recently been reelected for another two-year term.

   She describes physician education, research, and public awareness as important priorities for her continued work with the organization.

   For an in-depth discussion of her clinical interests, listen to her previous Tick Boot Camp appearance: Dr. Tania Dempsey on MCAS, Chronic Lyme Disease, GLP-1 Agonists, Biofilms, and Precision Medicine.

   New Research: GLP-1 Medications for Mast Cell Activation Syndrome

   One of the biggest developments Dr. Dempsey shares is her recently published research on GLP-1 receptor agonists and MCAS.

   GLP-1 receptor agonists are medications primarily used for conditions such as type 2 diabetes and obesity.

   Some of the medications discussed include:

   • Ozempic: Semaglutide
   • Wegovy: Semaglutide
   • Mounjaro: Tirzepatide
   • Zepbound: Tirzepatide

   Semaglutide acts on GLP-1 receptors, while tirzepatide acts on both GLP-1 and GIP receptors.

   Although these medications are widely associated with weight management, researchers are also investigating their broader metabolic and inflammatory effects.

   Dr. Dempsey explains that her research explores whether these effects could benefit certain patients with mast cell activation syndrome.

   She presented findings from the research at the ILADS conference and describes receiving enthusiastic feedback from other clinicians interested in the potential applications.

   Importantly, GLP-1 medications are not established or FDA-approved treatments for MCAS. The findings discussed in this episode are preliminary and require further research to determine effectiveness, safety, appropriate patient selection, and dosing.

   The 47-Patient GLP-1 and MCAS Case Series

   Dr. Dempsey highlights findings from a published case series involving 47 patients.

   According to her description:

   • The case series included 47 patients receiving GLP-1-based treatment.
   • Approximately 87% reportedly experienced a significant positive response.
   • Some patients reported improvements in joint pain.
   • Others experienced reductions in brain fog and additional symptoms.
   • Certain patients reported noticeable changes within hours of treatment.
   • Treatment approaches were individualized, including the use of low doses in some patients.

   These observations have generated interest because MCAS can be challenging to manage, particularly in patients who report sensitivities to multiple medications or supplements.

   Dr. Dempsey describes the results as especially encouraging for patients whose symptoms have persisted despite other interventions.

   However, a case series does not establish that a medication caused the reported improvements.

   Without a randomized control group, it is difficult to distinguish treatment effects from other influences, including natural symptom fluctuations, concurrent treatments, and selection bias.

   The reported 87% response rate should therefore be understood as a finding from this particular patient group—not a predicted success rate for everyone with MCAS.

   Larger, well-controlled clinical studies are needed.

   What Is Mast Cell Activation Syndrome (MCAS)?

   Rich asks Dr. Dempsey to explain MCAS in terms that patients without medical training can understand.

   She begins by describing the normal function of mast cells.

   Mast cells are immune cells that help the body respond to infections, allergens, and other potential threats.

   When activated, they release substances called mediators, which participate in immune signaling and inflammation.

   These mediators include histamine, cytokines, and other biologically active compounds.

   Under normal circumstances, mast cell activation is part of the body's protective response.

   Dr. Dempsey explains that in people with MCAS, mast cells may activate inappropriately or release mediators in ways that produce recurring symptoms.

   Because mast cells are present throughout the body, abnormal activation can affect multiple organ systems.

   MCAS is a recognized clinical condition, but diagnosing it requires more than the presence of nonspecific symptoms. Accepted diagnostic approaches consider characteristic episodes affecting multiple organ systems, objective evidence of mast cell mediator release, and response to appropriate treatment.

   Is MCAS an Overactive or Underactive Immune System?

   Rich asks whether MCAS should be understood as an overactive immune system, an underactive immune system, or an autoimmune disorder.

   Dr. Dempsey explains that she views the problem as potentially involving both excessive activation and impaired regulation.

   She describes how mast cells communicate with other immune cells through chemical signals.

   In her explanation, persistent mast cell activation may contribute to inflammatory activity while also influencing how other components of the immune system respond.

   She suggests that some patients may experience excessive inflammatory signaling alongside less effective immune responses in other areas.

   This proposed interaction is particularly important to her approach to patients with complex chronic illness.

   However, MCAS is not universally defined as a combination of overactive and suppressed immunity, and the specific mechanisms connecting mast cell activation with persistent tick-borne infections remain under investigation.

   Dr. Dempsey's explanation reflects her clinical interpretation of a complicated and evolving area of immunology.

   MCAS, Lyme Disease, Bartonella, and Chronic Inflammation

   Dr. Dempsey discusses how mast cell activation may intersect with conditions such as Lyme disease, Bartonella infection, and environmental exposures.

   She explains that her clinical approach considers both potential triggers and the patient's immune response.

   For example, she may evaluate suspected infections or environmental concerns while also addressing symptoms she attributes to mast cell activation.

   Her goal is to reduce inflammatory symptoms while investigating other possible contributors to illness.

   Dr. Dempsey emphasizes that patients with complex chronic conditions may have multiple overlapping problems that require different approaches.

   The relationship between MCAS and persistent symptoms attributed to Lyme disease or Bartonella is an active area of clinical interest, but it has not been established that MCAS is the underlying cause of persistent symptoms in most such patients.

   Patients with chronic symptoms benefit from a comprehensive evaluation that considers confirmed infections, other medical conditions, medication effects, and additional potential explanations.

   Can Mast Cell Dysfunction Affect Lyme Disease Antibody Testing?

   One of the interview's most thought-provoking discussions concerns the interpretation of antibody tests.

   Rich asks whether immune dysfunction could affect the reliability of laboratory tests that depend on detecting antibodies.

   Dr. Dempsey explains that antibody production depends on immune system activity and raises questions about how abnormal immune responses might affect test interpretation.

   She outlines three possible scenarios from her clinical perspective.

   Scenario 1: Antibody Production and Potential False Positives

   Dr. Dempsey describes patients who produce certain antibodies without having the disease most commonly associated with those antibodies.

   For example, she discusses antinuclear antibodies (ANA), which can be found in patients with autoimmune conditions but can also occur in people without a corresponding autoimmune diagnosis.

   She questions whether some antibody-based infectious disease results could be influenced by abnormal immune activity.

   This is an important distinction: the presence of an antibody does not always establish an active disease.

   However, a positive ANA does not by itself demonstrate that Lyme disease antibody tests are unreliable because of MCAS.

   Scenario 2: Reduced Antibody Responses and Potential False Negatives

   Dr. Dempsey also discusses patients who may have impaired antibody responses.

   She suggests that immune dysfunction could contribute to negative antibody results in some patients despite suspected infection.

   She references situations in which patients have limited reactivity on Lyme disease immunoblots and do not meet established interpretation criteria.

   Antibody tests can indeed be negative early in Lyme disease before an adequate antibody response develops.

   However, isolated immunoblot bands are not sufficient to diagnose Lyme disease, and there is not established evidence that MCAS routinely causes false-negative Lyme serology.

   Scenario 3: Antibody Tests That Accurately Reflect Exposure

   Dr. Dempsey acknowledges that antibody testing can also produce clinically useful results.

   She emphasizes the importance of understanding what a particular test measures and how it should be interpreted.

   For Lyme disease, validated two-tier serologic testing remains a central diagnostic tool, particularly in patients with later manifestations.

   Antibodies may remain detectable long after an infection has been treated, meaning a positive result does not necessarily indicate ongoing active infection.

   The central takeaway is that laboratory results must be interpreted within the patient's clinical context rather than viewed in isolation.

   For more information, visit Tick Boot Camp's Lyme Disease Testing Resource.

   Molecular Testing vs. Antibody Testing for Tick-Borne Infections

   Dr. Dempsey explains that she often prefers testing methods intended to identify an organism or its genetic material rather than relying exclusively on antibody measurements.

   She discusses molecular testing as an important area of diagnostic development.

   Molecular tests, such as polymerase chain reaction (PCR), can detect genetic material from certain pathogens.

   These methods can be particularly useful for some infections and clinical situations.

   However, their performance depends on factors including the organism, specimen type, timing, disease stage, and laboratory method.

   For example, a negative blood PCR test does not reliably exclude Lyme disease, and molecular testing is not universally more accurate than recommended serologic testing.

   Dr. Dempsey's discussion highlights her interest in improving diagnostic methods while raising important questions about how immune function may affect test interpretation.

   Rich also references conversations with laboratories working on tick-borne disease diagnostics, including IGeneX and Galaxy Diagnostics.

   The episode underscores the need for continued development and independent validation of diagnostic technologies.

   How Might GLP-1 Medications Affect Mast Cells?

   Returning to her research, Dr. Dempsey explains her proposed mechanism for why GLP-1 medications might help some patients with MCAS.

   She discusses receptors on the surface of mast cells and the possibility that medications interacting with these pathways may influence mast cell activation.

   In her explanation, GLP-1-related signaling could reduce the release of inflammatory mediators.

   This could potentially influence symptoms associated with excessive mast cell activity.

   She also describes broader immune-modulating effects that may contribute to symptom improvement.

   These mechanisms are biologically interesting, but their relevance to human MCAS treatment remains under investigation.

   The interview should not be interpreted as establishing that GLP-1 medications directly stabilize mast cells in patients or reliably reverse MCAS-related immune dysfunction.

   Ozempic vs. Mounjaro: Is Tirzepatide Better for MCAS?

   Rich asks Dr. Dempsey whether she has observed differences between semaglutide and tirzepatide.

   Dr. Dempsey explains that both medications have been used in her clinical experience, but she has recently observed encouraging responses with tirzepatide.

   She discusses the differences between the two drug classes.

   Semaglutide, marketed as Ozempic and Wegovy, acts on GLP-1 receptors.

   Tirzepatide, marketed as Mounjaro and Zepbound, acts on both GLP-1 and GIP receptors.

   Dr. Dempsey suggests that this dual activity may contribute to differences in inflammatory responses.

   She reports that some patients have responded particularly well to tirzepatide.

   However, the interview does not present controlled comparative data demonstrating that tirzepatide is more effective than semaglutide for MCAS.

   Her observations are preliminary and should not be interpreted as a recommendation to select one medication over another for this unapproved use.

   Can GLP-1 Medications Help Patients Who Don't Need to Lose Weight?

   One of the most interesting aspects of Dr. Dempsey's discussion involves patients who are not overweight.

   She explains that some individuals in her clinical experience have little or no weight to lose.

   For these patients, she discusses using very low doses of GLP-1-related medications while carefully monitoring their response.

   Dr. Dempsey emphasizes the importance of avoiding unwanted weight loss and muscle loss.

   She reports that some patients have experienced improvements in symptoms without substantial changes in body weight.

   This raises an important research question:

   Could some of the effects of GLP-1 medications on inflammation and immune signaling occur independently of weight loss?

   Researchers are investigating the broader physiological effects of these medications, but their use for MCAS in people without an approved indication remains experimental.

   GLP-1-related medications can cause significant adverse effects, including gastrointestinal symptoms, dehydration, gallbladder problems, and other complications. They are not appropriate for every patient.

   Very-low-dose or microdosing approaches for MCAS have not been established through large clinical trials.

   Patients should not begin, modify, or discontinue prescription medications based on this interview.

   Why Individualized Treatment Matters

   Dr. Dempsey repeatedly emphasizes that patients with MCAS can be unusually sensitive to medications and supplements.

   She explains that treatment decisions require careful consideration of each patient's health history, symptoms, tolerability, and medical needs.

   She also acknowledges that GLP-1 medications have side effects.

   Her research interests focus on identifying treatments that may help patients whose symptoms have been difficult to manage.

   However, she does not suggest that every patient with MCAS should receive a GLP-1 medication.

   The conversation reinforces the importance of individualized medical assessment, appropriate monitoring, and informed discussions about potential benefits and risks.

   Taking MCAS Research to a Larger Audience

   Rich congratulates Dr. Dempsey on her growing visibility through major podcast appearances.

   They discuss her interview with Dave Asprey and how larger platforms can introduce complex medical topics to audiences who may never have encountered them before.

   Dr. Dempsey explains that reaching more people is central to her mission.

   Although she continues to care deeply about her own patients, she recognizes that she cannot personally treat everyone seeking help.

   Through education, research, professional collaboration, and public conversations, she hopes to improve awareness and encourage other clinicians to learn more about complex chronic illness.

   She also expresses appreciation for Tick Boot Camp's role in sharing patient experiences and conversations with healthcare professi

4. Episode 627: Why Lyme Patients Feel Dismissed: How to Get Doctors to Listen – Dr. Kirsten FitzGerald | LIVE from ILADS

   12.11.202631 Min.Staffel 1 · Folge 627Als Nächstes

   What do you do when you're sick, your Lyme disease test comes back negative, and your doctor tells you everything is fine—even though you know something is wrong? For many people living with Lyme disease …

   Shownotes

   What do you do when you're sick, your Lyme disease test comes back negative, and your doctor tells you everything is fine—even though you know something is wrong?

   For many people living with Lyme disease, tick-borne infections, and complex chronic illness, the search for answers can involve years of unexplained symptoms, multiple specialists, frustrating medical appointments, and feeling dismissed by the healthcare system.

   But what if improving the patient-doctor relationship could become one of the most important steps toward finding answers?

   In this LIVE from ILADS episode of the Tick Boot Camp Podcast, co-host Rich Johannesen sits down with Dr. Kirsten P. FitzGerald, DNP, FNP-BC, a board-certified family nurse practitioner and functional medicine provider based in Ridgefield, Connecticut, to discuss Lyme disease awareness, missed diagnoses, patient advocacy, and the importance of building collaborative relationships between patients and healthcare professionals.

   Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation explores how Dr. FitzGerald transitioned from conventional primary care into functional and integrative medicine after recognizing that some patients with persistent symptoms were not finding the answers or support they needed.

   Dr. FitzGerald shares her experiences working with patients affected by Lyme disease, long COVID, mast cell-related concerns, and pediatric neuroinflammatory conditions, including PANS and PANDAS.

   Together, Rich and Dr. FitzGerald develop a practical framework for helping patients prepare for medical appointments, communicate more effectively, participate in treatment decisions, and work with their providers toward better health outcomes.

   Their central message: Patients deserve to be heard, and meaningful progress often begins when patients and clinicians work together as partners.

   Meet Dr. Kirsten P. FitzGerald, DNP, FNP-BC

   Dr. Kirsten P. FitzGerald is a Doctor of Nursing Practice and board-certified Family Nurse Practitioner with more than 25 years of healthcare experience.

   She is the founder of FitzGerald Health and Wellness, an integrative and functional medicine practice in Ridgefield, Connecticut.

   She also collaborates with the team at New Frontiers Functional Medicine & Nutrition, led by Dr. Kara Fitzgerald in Sandy Hook, Connecticut, and works alongside pediatric naturopathic physician Dr. Lindsey Wells, ND, in Trumbull, Connecticut.

   Her clinical interests include:

   • Lyme disease and tick-borne infections
   • Persistent and complex chronic symptoms
   • Long COVID and post-infectious illness
   • Functional and integrative medicine
   • Mast cell activation syndrome (MCAS)
   • PANS and PANDAS
   • Metabolic health and lifestyle medicine
   • Patient education and collaborative care

   Dr. FitzGerald grew up on a trout farm in Connecticut and has spent much of her life around animals, including horses, chickens, cats, and dogs.

   Despite living in a region historically associated with Lyme disease, she explains that her understanding of the complexity of tick-borne illness changed significantly after attending a professional presentation.

   That experience ultimately helped redirect her medical career.

   Learn more about Dr. Kirsten FitzGerald and her clinical background.

   From Conventional Primary Care to Functional Medicine

   Dr. FitzGerald describes a pivotal moment at an advanced practice registered nurse (APRN) conference in Connecticut.

   A presentation by fellow clinician Pam Cipriano challenged her understanding of Lyme disease and prompted her to reconsider patients she had previously encountered.

   She began thinking about people whose Lyme disease test results had been negative despite symptoms and exposure histories that continued to raise clinical questions.

   Dr. FitzGerald explains that conventional primary care often relies on established diagnostic pathways, laboratory testing, and specialist referrals.

   These tools are essential, but she became increasingly concerned about patients whose symptoms remained unexplained after multiple evaluations.

   During the COVID-19 pandemic, she encountered additional patients struggling with persistent symptoms, including long COVID.

   One experience was particularly influential.

   A patient who was also a nurse became emotional during an appointment and asked Dr. FitzGerald to stop sending her to additional specialists.

   The patient wanted someone to take responsibility for understanding her overall health picture rather than continuing a cycle of referrals without satisfactory answers.

   For Dr. FitzGerald, that conversation reinforced the need to expand her knowledge and explore different approaches to complex chronic illness.

   She eventually transitioned toward functional and integrative medicine, including working with Dr. Kara Fitzgerald's New Frontiers team.

   The conversation illustrates why continuity of care, clinical curiosity, and thoughtful follow-up matter when patients experience symptoms that do not fit neatly into one diagnosis.

   Why Lyme Disease Can Be Difficult to Recognize

   Dr. FitzGerald expresses frustration that Lyme disease and other tick-borne illnesses are not always considered during evaluations of patients with unexplained symptoms—even in Connecticut.

   She describes how patients may visit several specialists for seemingly unrelated problems without anyone initially recognizing a possible connection.

   Symptoms discussed include:

   • Persistent fatigue
   • Brain fog and cognitive difficulties
   • Headaches and migraines
   • Tremors and neurological complaints
   • Joint and muscle pain
   • Changes in mood or irritability
   • Symptoms initially attributed to aging or menopause
   • Other unexplained changes in physical functioning

   Dr. FitzGerald explains that patients may see orthopedic specialists for pain, neurological specialists for tremors, and other providers for fatigue or cognitive concerns.

   Each specialist may focus on a particular symptom or organ system.

   Her concern is that clinicians can sometimes miss the broader pattern.

   Could several seemingly unrelated symptoms have a common explanation?

   Lyme disease and other tick-borne infections are among the conditions that may warrant consideration when a patient's history and clinical findings support that possibility.

   However, these symptoms are not specific to Lyme disease. Many other medical conditions can produce similar complaints, and appropriate evaluation should consider alternative explanations.

   Dr. FitzGerald's message is not simply to test everyone for Lyme disease, but to remain attentive to exposure history, symptom patterns, and unresolved clinical questions.

   For more information about the strengths and limitations of available tests, explore Tick Boot Camp's Lyme Disease Testing Resource.

   When Lyme Disease Tests Are Negative but Symptoms Continue

   One of the challenges discussed in the episode is the interpretation of Lyme disease testing.

   Dr. FitzGerald recalls patients whose initial tests were negative even though she remained concerned about the possibility of tick-borne illness.

   Rich and Dr. FitzGerald discuss the frustration patients can experience when a negative test result ends the conversation despite ongoing symptoms.

   Lyme disease testing has important limitations, particularly early in infection, when antibodies may not yet be detectable.

   At the same time, persistent symptoms and negative testing do not automatically establish an undiagnosed Lyme infection.

   The appropriate next step depends on the patient's symptoms, exposure history, examination, timing of testing, and other potential diagnoses.

   This episode encourages patients to ask informed questions about test results rather than assuming that one result always tells the complete story.

   Why Dr. FitzGerald Attends ILADS Conferences

   Dr. FitzGerald explains that attending the ILADS conference helps her expand her understanding of tick-borne illnesses and connect with healthcare professionals who encounter complex cases.

   She values opportunities to learn from other clinicians, explore research, and discuss diagnostic challenges.

   She also hopes to bring information back to her colleagues in conventional medical settings.

   Throughout the interview, Dr. FitzGerald emphasizes that changing medical practice requires education, open dialogue, and a willingness to consider new evidence.

   She believes that increasing awareness among primary care providers, nurse practitioners, pediatricians, and other healthcare professionals can help patients receive more informed evaluations.

   The conference also provides an opportunity to connect with clinicians who share her interest in patient-centered care.

   The Patient-Doctor Relationship: A Partnership, Not a One-Way Conversation

   The conversation takes an important turn when Rich asks Dr. FitzGerald a question that patients do not always hear:

   What can patients do to help their doctors provide better care?

   Rather than focusing exclusively on the shortcomings of the healthcare system, Rich suggests that patients may benefit from approaching medical appointments as active participants.

   Dr. FitzGerald agrees.

   She explains that patients can contribute valuable information that may not be immediately apparent from laboratory results or a brief office visit.

   Together, they discuss how a collaborative relationship allows both the patient and clinician to make better use of their time, knowledge, and resources.

   This does not mean patients are responsible for diagnostic errors, inadequate access to care, or dismissive treatment.

   Instead, the conversation offers practical ways for patients to strengthen communication and advocate for themselves within the healthcare system.

   Step 1: Prepare Thoroughly Before Your Medical Appointment

   Dr. FitzGerald explains that her initial consultations typically last at least two hours and sometimes extend to three hours.

   Before those appointments, she asks patients to complete detailed medical history and intake forms.

   She acknowledges that this paperwork can feel overwhelming, particularly for patients already struggling with fatigue, brain fog, or other symptoms.

   However, she explains that comprehensive intake information helps her begin understanding the patient's health history before they meet.

   The forms may reveal important details about previous illnesses, symptoms, medications, treatments, and medical events.

   They also allow her to identify questions she wants to explore during the appointment.

   Rich shares his own experience completing extensive intake paperwork before seeing a Lyme-focused physician.

   Initially, he found the process frustrating.

   But as he worked through the forms, he began recalling medical events and health concerns he had not previously considered relevant.

   The experience changed how he approached his medical care.

   Instead of arriving at an appointment expecting the doctor to gather all the information and provide an immediate solution, he began seeing himself as an active partner.

   Dr. FitzGerald encourages patients to approach medical history forms thoughtfully.

   Practical Ways to Prepare

   Before an appointment, consider organizing:

   • A timeline of symptoms and when they began
   • Previous diagnoses and medical evaluations
   • Important laboratory results and imaging reports
   • Current medications and supplements
   • Previous treatments and responses
   • Relevant travel, tick exposure, and environmental history
   • Changes in physical, cognitive, or emotional functioning
   • Questions and concerns you want to discuss

   A trusted family member or caregiver may be able to help patients who have difficulty organizing information because of illness.

   The goal is not to create a perfect medical record. It is to help your healthcare provider understand your experience as accurately as possible.

   Step 2: Share Your Complete Story Without Embarrassment

   Dr. FitzGerald offers one of the episode's most important messages:

   “Don't hold back. Put it all on the table.”

   She encourages patients to discuss their symptoms openly, even when those symptoms feel embarrassing, confusing, or difficult to explain.

   She wants to know how patients feel physically and emotionally, what has changed over time, and what they have experienced during previous medical evaluations.

   Dr. FitzGerald acknowledges that many patients arrive at her office after disappointing encounters with other healthcare professionals.

   Some are exhausted.

   Others are frustrated or fearful.

   Some become emotional while describing years of illness.

   She explains that these reactions are welcome in her office and that she keeps tissues available for patients who need them.

   Patients should not feel pressured to minimize symptoms, hide concerns, or present themselves as doing better than they actually are.

   Honest communication helps clinicians understand both the medical and personal impact of illness.

   For people who have repeatedly felt dismissed, finding a healthcare professional who listens can be an important part of rebuilding trust.

   Step 3: Participate in Developing Your Treatment Plan

   Rich and Dr. FitzGerald agree that patients should be involved in decisions about their healthcare.

   A treatment plan should not simply be a collection of instructions handed to someone at the end of an appointment.

   Instead, patients should understand what is being recommended, why it is being recommended, and what outcomes they should monitor.

   Important questions may include:

   • What diagnoses are we considering?
   • What is the purpose of this test or treatment?
   • What benefits and risks should I understand?
   • What alternatives are available?
   • How will we measure progress?
   • What should I do if symptoms change?
   • When should I follow up?

   Dr. FitzGerald emphasizes that patients need to understand their responsibilities and feel comfortable participating in decisions.

   Rich describes this as a partnership in which both sides contribute.

   The clinician brings medical training, diagnostic reasoning, and professional judgment.

   The patient brings personal experience, symptom history, preferences, and feedback about how treatment affects daily life.

   Working together can help create a plan that is both medically appropriate and realistic for the individual.

   Step 4: Follow Through—and Speak Up When Something Isn't Working

   Dr. FitzGerald explains that medical appointments are only one part of the care process.

   Patients spend most of their time outside the clinic, where they must manage medications, follow recommendations, and monitor changes in their health.

   She discusses the importance of following agreed-upon treatment plans, including lifestyle recommendations when appropriate.

   However, she also stresses that patients should not continue suffering silently when a treatment is not helping.

   If symptoms worsen, side effects develop, or a plan becomes difficult to follow, patients should contact their healthcare provider.

   Rich and Dr. FitzGerald emphasize that follow-up communication is an essential part of the partnership.

   Patients should share both improvements and setbacks.

   Dr. FitzGerald recalls how meaningful it can be when someone contacts her simply to say they are feeling better.

   These updates provide feedback about the patient's experience and help clinicians understand how their recommendations are working.

   Progress should be evaluated through ongoing communication—not assumptions.

   Why Lyme Patients May Need Additional Support

   Rich asks whether people with Lyme disease should approach medical appointments differently from other patients.

   Dr. FitzGerald explains that many people seeking care for suspected tick-borne illness have already experienced years of frustration.

   Some have been told their symptoms are caused by stress, aging, menopause, or other conditions.

   Others have visited multiple specialists without finding a clear explanation.

   These experiences can make patients hesitant to trust another healthcare professional or share their complete history.

   Dr. FitzGerald encourages patients to describe their symptoms comprehensively rather than presenting each concern as an isolated problem.

   She believes that understanding the full pattern can help clinicians determine whether Lyme disease, another tick-borne illness, or a different condition warrants investigation.

   For patients who have struggled to find answers, she emphasizes the importance of working with someone willing to listen, explain their reasoning, and consider appropriate next steps.

   Lyme Disease, Brain Fog, and Neuropsychiatric Symptoms

   Another important discussion involves the neurological and psychological dimensions of Lyme disease and complex chronic illness.

   Rich introduces Tick Boot Camp's patient-informed description of Lyme disease as:

   A polymicrobial, multisystemic, chronic infectious or post-infectious disease.

   Dr. FitzGerald responds positively but suggests that neurological and neuropsychiatric symptoms deserve greater emphasis.

   She discusses concerns involving cognition, mood, and neurological functioning.

   Rich acknowledges the importance of these symptoms and explains how Tick Boot Camp's understanding has evolved through interviews with patients and healthcare professionals.

   The conversation raises broader questions about how clinicians distinguish active infection, post-infectious symptoms, other tick-borne diseases, and unrelated medical conditions.

   Neurological manifestations of Lyme disease are recognized, and some patients experience persistent symptoms after recommended treatment. However, the mechanisms and appropriate management of persistent symptoms remain areas of ongoing research and clinical discussion.

   Tick Boot Camp's proposed description is an advocacy framework discussed during the interview, not an established consensus medical definition.

   For another perspective on neurological symptoms and cognitive recovery, explore Dr. Jacqueline Becker's work on brain fog and cognitive rehabilitation.

   PANS, PANDAS, and Pediatric Complex Chronic Illness

   Dr. FitzGerald also discusses collaborating with Dr. Lindsey Wells, ND, in Trumbull, Connecticut.

   Their work includes supporting families navigating PANS and PANDAS.

   These conditions involve sudden-onset or significant neuropsychiatric symptoms in children and can present complex diagnostic and treatment challenges.

   The i

5. Episode 626: Why Treating Lyme Disease Requires More Than Antibiotics – Dr. Sigrid Blehle | LIVE from ILADS

   11.11.202620 Min.Staffel 1 · Folge 626Als Nächstes

   What happens when Lyme disease treatment focuses on infections, but patients continue struggling with debilitating symptoms? Could mold exposure, gut health, immune dysfunction, or other underlying health …

   Shownotes

   What happens when Lyme disease treatment focuses on infections, but patients continue struggling with debilitating symptoms? Could mold exposure, gut health, immune dysfunction, or other underlying health challenges be complicating recovery?

   In this LIVE from ILADS interview, Tick Boot Camp co-host Rich Johannesen welcomes Dr. Sigrid Blehle, MD, MBA, PhD, Medical Director of Alviasana in Augsburg, Germany, to explore her integrative approach to Lyme disease, chronic infections, and complex chronic illness.

   Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation examines why Dr. Blehle believes that identifying and treating infections is only one part of helping patients with complicated medical histories.

   Dr. Blehle discusses her approach to evaluating environmental exposures, mold, heavy metals, gut microbiome health, immune function, nutritional status, and possible tick-borne infections before developing individualized treatment plans.

   She also shares her experience with antibiotic therapy, herbal medicine, intravenous treatments, and other integrative interventions, while explaining how her multidisciplinary clinic works with patients from Europe, the United States, Africa, and Asia.

   One of her most striking examples involves a patient who had already consulted 48 physicians before arriving at her clinic.

   The central message of this interview is that patients with complex symptoms deserve careful listening, comprehensive medical histories, and individualized evaluation rather than assumptions about what is causing their illness.

   Meet Dr. Sigrid Blehle: Lyme Disease Physician in Germany

   Dr. Sigrid Blehle, MD, MBA, PhD, is a German physician and Medical Director of Alviasana, an integrative medical clinic based in Augsburg, Germany.

   Her clinical interests include:

   • Lyme disease and other tick-borne infections
   • Complex and persistent symptoms following infectious illnesses
   • Post-COVID conditions
   • Environmental exposures, including mold
   • Heavy metal exposure
   • Mast cell activation syndrome (MCAS)
   • Gut microbiome health
   • Nutritional and metabolic concerns
   • Genetic and immune-related factors

   Dr. Blehle describes her clinic's approach as comprehensive, emphasizing that patients frequently arrive with overlapping health concerns rather than a single clearly identified diagnosis.

   She explains that many of her patients have already visited numerous physicians, undergone extensive testing, and tried multiple treatments before seeking care at Alviasana.

   For these patients, her goal is to investigate potentially relevant contributors to their symptoms and develop a personalized treatment strategy.

   When You're the 49th Doctor: The Challenges of Complex Chronic Illness

   Early in the conversation, Dr. Blehle shares the story of a patient who had already seen 48 doctors before visiting her clinic.

   Dr. Blehle became the patient's 49th physician.

   The example illustrates a familiar experience for many people living with persistent, unexplained symptoms: years of medical appointments, conflicting explanations, unsuccessful treatments, and uncertainty about what to do next.

   Dr. Blehle believes that patients with complex chronic illness often require a broader assessment of their health history.

   Rather than assuming that every symptom has the same cause, she considers possible infections alongside environmental, nutritional, immune, and other medical factors.

   Rich and Dr. Blehle discuss why listening carefully to the patient's experiences is an essential first step.

   For people who have struggled to find answers, a comprehensive evaluation can provide an opportunity to revisit overlooked questions and identify areas that may warrant additional investigation.

   Why Dr. Blehle Believes Lyme Disease Treatment Requires a Broader Approach

   One of the interview's central themes is Dr. Blehle's belief that treating suspected infections alone may not address every factor contributing to a patient's illness.

   She explains that her clinical approach considers the broader health picture, including possible environmental exposures and underlying medical conditions.

   For example, a patient may have a history of tick exposure while also experiencing gastrointestinal problems, nutritional deficiencies, or symptoms associated with another illness.

   Dr. Blehle believes these issues should be considered together when developing a treatment plan.

   Her approach reflects her clinical experience and treatment philosophy. The interview does not establish that all the factors discussed cause persistent Lyme disease symptoms or that treating them improves outcomes for every patient.

   Step One: A Comprehensive Patient History

   Before ordering laboratory tests, Dr. Blehle begins with an extensive medical history.

   She wants to understand not only the patient's symptoms, but also their environment, travel history, previous illnesses, and treatment experiences.

   Questions may include:

   • Where does the patient live?
   • Have they experienced known or suspected tick bites?
   • Have they been exposed to mosquitoes or other biting insects?
   • Have they traveled internationally?
   • Did symptoms begin after an infection or travel?
   • Have they lived or worked in buildings with water damage or visible mold?
   • Have they received antibiotics or other treatments?
   • What medical diagnoses have previously been considered?
   • Which symptoms have persisted or changed over time?

   Dr. Blehle describes how travel history can provide important clues.

   For example, a patient may have become ill during or after traveling abroad, with symptoms continuing long after returning home.

   She believes that understanding the timing and circumstances of symptom onset helps determine which diagnostic tests may be appropriate.

   Her guiding principle is to use the medical history to select targeted investigations rather than ordering the same extensive laboratory panel for every patient.

   Mold Exposure and Environmental Factors in Chronic Illness

   Rich asks Dr. Blehle about the relationship between environmental exposures and chronic symptoms.

   In particular, they discuss mold exposure in homes and workplaces.

   Dr. Blehle explains that she asks patients about their living environments and considers possible mold exposure during the initial assessment.

   When environmental concerns arise, she may recommend investigating the home for moisture damage or visible mold, including areas behind wallpaper or walls.

   She also discusses using laboratory testing in her clinical evaluation.

   Rich emphasizes the importance of identifying and reducing ongoing environmental exposures rather than focusing exclusively on testing the patient.

   Does Mold Exposure Affect Lyme Disease Treatment?

   Dr. Blehle shares her clinical belief that addressing suspected mold-related problems before antimicrobial treatment may improve the effectiveness of her broader treatment plan.

   She describes using a similar sequence when she suspects heavy metal-related concerns.

   These are her reported clinical practices, not established evidence that mold or heavy metal treatment improves Lyme disease outcomes.

   Mold exposure can contribute to recognized health problems, particularly respiratory symptoms and allergic conditions. However, testing for mold-related illness is complex, and some commercially marketed body tests have not been validated for diagnosing illness caused by indoor mold.

   The conversation raises important questions about environmental health while highlighting the need for appropriate medical assessment and evidence-based testing.

   Heavy Metals, Genetic Factors, and Metabolic Health

   In addition to mold, Dr. Blehle discusses investigating potential heavy metal exposures and selected genetic or metabolic concerns.

   She explains that testing depends on the patient's history and clinical presentation.

   Her approach includes considering whether certain medical conditions or exposures may be contributing to symptoms.

   Rich asks whether she evaluates the body's ability to process or eliminate substances.

   Dr. Blehle describes using genetic testing in selected circumstances rather than routinely ordering it for everyone.

   This portion of the interview highlights the importance of distinguishing between documented toxic exposures, established medical conditions, and unproven explanations for chronic symptoms.

   Heavy metal testing and treatment should be guided by clinically meaningful exposure histories and validated methods.

   Gut Microbiome Health and Lyme Disease

   One of the most detailed sections of the interview focuses on the gut microbiome, the community of microorganisms living in the digestive tract.

   Dr. Blehle explains that many of her patients have previously undergone antibiotic treatment.

   Because antibiotics can affect intestinal bacteria, she considers gastrointestinal health when planning additional treatment.

   She believes the gut microbiome is an important part of evaluating patients with complex chronic illness.

   Research has established connections between the intestinal microbiome and immune function, although the clinical significance of many commercial microbiome test results remains uncertain.

   How Does Dr. Blehle Test the Gut Microbiome?

   Dr. Blehle describes using stool testing to evaluate aspects of intestinal microbial composition.

   She also discusses measuring substances such as histamine in stool samples.

   She explains that she may address identified gastrointestinal concerns before beginning additional antimicrobial treatment.

   Her goal is to consider digestive health and previous treatment effects as part of the overall care plan.

   However, there is currently no universally accepted stool microbiome profile that defines optimal immune health or reliably predicts Lyme disease treatment outcomes.

   The interview presents Dr. Blehle's clinical approach rather than establishing that routine microbiome testing is necessary for Lyme disease patients.

   Fecal Microbiota Transplantation: Could Restoring Gut Bacteria Help?

   Rich asks Dr. Blehle about fecal microbiota transplantation (FMT), a procedure that transfers processed stool-derived microorganisms from a donor into a recipient's gastrointestinal tract.

   Dr. Blehle shares that she has treated one patient who underwent the procedure and appeared to benefit.

   She emphasizes that this experience involved only one patient.

   Rich also recalls interviewing patients who described improvements after undergoing fecal microbiota transplantation during their recovery journeys.

   The discussion raises questions about the relationship between the gut microbiome, antibiotic exposure, and long-term health.

   FMT has established clinical applications for selected cases of recurrent Clostridioides difficile infection. It is not an established treatment for Lyme disease or post-treatment Lyme disease symptoms, and it carries infectious and other risks.

   Dr. Blehle's anecdote should not be interpreted as evidence that FMT is effective for Lyme disease.

   Evaluating Liver, Kidney, Thyroid, and Nutritional Health

   Dr. Blehle explains that her initial evaluation commonly includes laboratory testing to assess general health and organ function.

   Depending on the patient, this may involve:

   • Liver function tests
   • Kidney function tests
   • Complete blood count
   • Differential white blood cell count
   • Vitamin and nutritional assessments
   • Thyroid-related testing
   • Selected metabolic or genetic investigations

   She also describes using an electrocardiogram (ECG) and abdominal ultrasound as part of her clinic's evaluation.

   These assessments can provide information about a patient's overall medical condition and help clinicians consider treatment risks.

   Dr. Blehle emphasizes that she wants a broad understanding of each patient's health before making treatment decisions.

   Testing for Lyme Disease and Tick-Borne Coinfections

   After reviewing the patient's history and general health, Dr. Blehle discusses testing for infections.

   She explains that she considers a variety of bacterial, viral, fungal, and parasitic conditions depending on the patient's symptoms and exposure history.

   Organisms and infections discussed include:

   Tick-Borne Bacteria and Parasites

   • Borrelia species, associated with Lyme disease and other borrelial infections
   • Babesia species, which can cause babesiosis
   • Bartonella species
   • Ehrlichia species
   • Anaplasma species

   Other Bacterial Infections

   • Yersinia
   • Chlamydia pneumoniae
   • Chlamydia trachomatis
   • Campylobacter

   Viral Infections

   • Epstein-Barr virus (EBV)
   • Cytomegalovirus (CMV)
   • Human herpesvirus 6 (HHV-6)
   • Parvovirus

   Other Potential Conditions

   • Toxoplasmosis
   • Selected parasitic infections
   • Candida-related conditions

   Dr. Blehle explains that she does not routinely order one standardized infectious disease panel for every patient.

   Instead, she selects tests based on her assessment of the patient's medical history and symptoms.

   An important distinction: Not every organism mentioned is transmitted by ticks, and a positive antibody test does not necessarily establish an active infection. Test results must be interpreted alongside symptoms, exposure history, examination findings, and the known accuracy of the test.

   For additional information about diagnostic challenges, explore Tick Boot Camp's Lyme Disease Testing Resource.

   Why Dr. Blehle Uses ArminLabs for Lyme Disease Testing

   Rich asks Dr. Blehle which laboratories she uses when evaluating Lyme disease and potential coinfections.

   She explains that she frequently works with ArminLabs, a laboratory based in Germany.

   Dr. Blehle describes having a longstanding professional relationship with the laboratory and familiarity with its testing methods.

   She also uses other laboratories when additional information is needed.

   Rich shares his positive experiences speaking with Dr. Armin Schwarzbach and expresses appreciation for his work in tick-borne disease diagnostics.

   The conversation highlights the importance of understanding which tests are being ordered, what they measure, and how their results inform clinical decisions.

   Different laboratory methods have different strengths, limitations, and levels of clinical validation. Patients should discuss the implications of testing with qualified healthcare professionals.

   Building an Individualized Lyme Disease Treatment Plan

   Once the medical history, examination, and testing have been completed, Dr. Blehle schedules a follow-up discussion to review the results.

   She explains that the next step is developing a personalized treatment plan.

   Depending on her assessment, the plan may include:

   • Prescription antimicrobial medications
   • Herbal treatments
   • Nutritional support
   • Selected supplements
   • Management of identified medical conditions
   • Monitoring of symptoms and laboratory findings
   • Additional interventions offered at her clinic

   Dr. Blehle describes preparing separate plans for prescription medications and supplements when appropriate.

   She also explains that treatment decisions are discussed with other members of her clinical team.

   The goal is to tailor care to the patient's presentation rather than assume that everyone requires the same treatment.

   Antibiotics vs. Herbal Treatments for Chronic Lyme Disease

   Rich asks Dr. Blehle how she approaches antimicrobial treatment.

   She explains that her clinic uses both prescription antibiotics and herbal treatments.

   According to Dr. Blehle, some patients receive antibiotic-based treatment plans, while others pursue herbal approaches.

   She describes her typical treatment timelines as:

   • Antibiotic-based approaches: Approximately 8–12 months
   • Herbal approaches: Approximately 18–24 months

   These durations represent Dr. Blehle's reported clinical practices, not standard treatment recommendations or evidence that prolonged therapy is effective for every patient.

   Established antibiotic regimens for Lyme disease are generally substantially shorter and depend on the specific clinical manifestation.

   Prolonged antimicrobial treatment can carry important risks, and the evidence does not support routinely extending antibiotics for persistent nonspecific symptoms after recommended Lyme disease treatment.

   Likewise, herbal products vary in composition, safety, and supporting clinical evidence.

   Patients should discuss treatment decisions with appropriately qualified clinicians.

   IV Antibiotics, Infusions, and Integrative Therapies

   Dr. Blehle describes several interventions available at Alviasana.

   These include:

   • Intravenous antibiotic treatment in selected cases
   • Vitamin C infusions
   • Amino acid infusions
   • Ozone therapy
   • Magnetic field therapy
   • Light-based therapies
   • Other individualized supportive treatments

   She also mentions a temperature-based treatment transcribed as “hypothermia.” The recording does not make clear whether she intended to describe hypothermia or hyperthermia, so the exact intervention would need confirmation.

   Dr. Blehle explains that she does not believe every patient requires intravenous antibiotics.

   She reserves them for selected situations based on her clinical assessment.

   It is important to distinguish between therapies with established medical indications and experimental or insufficiently validated approaches.

   For example, IV antibiotics may be indicated for certain manifestations of Lyme disease, but they are not automatically necessary for persistent symptoms. Ozone therapy and magnetic field therapies are not established treatments for Lyme disease.

   The interview provides an overview of services described by Dr. Blehle rather than evidence that each intervention is safe or effective for Lyme disease.

   What Does Recovery From Lyme Disease Look Like?

   Toward the end of the interview, Rich asks Dr. Blehle how her team determines whether a patient has recovered.

   She explains that her clinic considers both symptoms and follow-up testing.

   Dr. Blehle describes using a period of at least four months without symptoms and with negative test results as part of her clinic's approach to assessing recovery.

   She also discusses patients returning periodically for additional testing because they fear their infect

6. Episode 625: 25 Doctors, 10 Misdiagnoses: From Lyme Patient to Advocate – Melinda Elliott Sander | LIVE from ILADS

   10.11.202625 Min.Staffel 1 · Folge 625Als Nächstes

   After seeing 25 doctors, receiving 10 misdiagnoses, and facing the possibility of ALS, multiple sclerosis, or early-onset Alzheimer's disease, Melinda Elliott Sander finally discovered that tick-borne illness …

   Shownotes

   After seeing 25 doctors, receiving 10 misdiagnoses, and facing the possibility of ALS, multiple sclerosis, or early-onset Alzheimer's disease, Melinda Elliott Sander finally discovered that tick-borne illness was behind her devastating health journey. Today, she's helping change the future of Lyme disease advocacy across America.

   In this LIVE from ILADS interview, Tick Boot Camp co-host Rich Johannesen welcomes Melinda Elliott Sander, a Missouri Lyme disease patient advocate and Community Engagement Fellow with Center for Lyme Action, to discuss her journey from seriously ill mother of three to national advocate fighting for improved Lyme disease research, awareness, funding, and patient protections.

   Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation explores the challenges of diagnosing tick-borne diseases in the Midwest, the growing impact of alpha-gal syndrome, and how grassroots advocacy is influencing federal legislation.

   Melinda shares how she began contacting lawmakers while bedridden, eventually becoming involved in a national movement that grew from approximately 30–40 early advocates to more than 10,000 participants at the time of the interview.

   Rich and Melinda also discuss five federal legislative proposals designed to improve tick-borne disease research, prevention, public health infrastructure, patient protections, and access to information.

   Their message is empowering: You don't have to be healthy, wealthy, or politically connected to make a difference. Even when chronic illness has taken so much from you, your voice can help create meaningful change.

   Meet Melinda Elliott Sander: Lyme Disease Patient Advocate

   Melinda Elliott Sander is a Lyme disease patient advocate from north-central Missouri who has spent approximately a decade raising awareness about Lyme disease and other tick-borne illnesses.

   She serves as a Community Engagement Fellow with Center for Lyme Action, a national advocacy organization dedicated to increasing federal funding and advancing policy solutions for Lyme disease, alpha-gal syndrome, and other tick-borne conditions.

   Melinda has participated in Center for Lyme Action's advocacy efforts since the organization's early days in 2020.

   She now works to strengthen state-level advocacy teams, connect patients with opportunities to participate in public policy, and help expand the organization's national network.

   At the time of the interview, Melinda was completing a public health degree at Western Governors University.

   Her mission is deeply personal.

   After experiencing years of debilitating illness and struggling to obtain an accurate diagnosis, she committed herself to helping other patients avoid the same challenges.

   25 Doctors, 10 Misdiagnoses, and Eight Medical Specialties

   Approximately 10 years before this interview, Melinda became seriously ill while raising three young children.

   Her symptoms were severe, but physicians struggled to determine what was causing them.

   During her diagnostic journey, she consulted:

   • 25 physicians
   • Eight medical specialties
   • 10 different diagnoses

   Doctors considered serious neurological conditions, including ALS, multiple sclerosis, and early-onset Alzheimer's disease.

   Melinda describes how frightening this experience was, especially while caring for her children and trying to maintain hope for her future.

   Eventually, she learned that tick-borne illness was involved.

   The diagnosis surprised her.

   She had already considered and ruled out numerous possibilities, and tick-borne disease was not something she initially believed could explain her symptoms.

   Her experience illustrates the emotional and physical toll of a prolonged diagnostic journey.

   It also highlights the importance of comprehensive medical evaluation when patients experience persistent, unexplained symptoms.

   Why Lyme Disease Awareness Matters in Missouri

   Melinda lives approximately 30 miles north of Columbia, Missouri.

   She explains that people in her region are sometimes told Lyme disease does not exist in their state.

   Yet Missouri has extensive outdoor activity involving farming, hunting, hiking, and recreation.

   Residents regularly encounter ticks in fields, forests, backyards, and other everyday environments.

   Melinda believes greater awareness of tick-borne diseases is needed among healthcare professionals and the public.

   Rich contrasts her experience with living on Long Island, New York, where Lyme disease is widely recognized.

   He explains that patients in highly endemic areas may face different diagnostic challenges than patients in regions where Lyme disease is considered less common.

   Importantly, tick-borne disease risks vary by geography and tick species. Missouri is associated with several significant tick-borne health concerns, including ehrlichiosis, spotted fever group rickettsioses, and alpha-gal syndrome.

   Melinda's message is that tick exposure should not be dismissed simply because someone lives outside a traditionally recognized Lyme disease hotspot.

   For guidance following a tick bite, explore Tick Boot Camp's Tick Bite Blueprint.

   Alpha-Gal Syndrome: A Major Public Health Concern in Missouri

   One of the most important topics in this interview is alpha-gal syndrome (AGS), a potentially serious allergy associated with certain tick bites.

   In the United States, alpha-gal syndrome is strongly associated with bites from the lone star tick.

   The condition involves an immune response to alpha-gal, a sugar found in most non-primate mammals.

   People with alpha-gal syndrome may experience allergic reactions after consuming certain mammalian foods or encountering other products containing alpha-gal.

   Symptoms can include:

   • Hives and itching
   • Gastrointestinal distress
   • Swelling
   • Breathing difficulties
   • Severe allergic reactions, including anaphylaxis

   Melinda describes Missouri as a significant area of concern for alpha-gal syndrome.

   She discusses how the condition can affect farmers, hunters, and families whose livelihoods involve livestock.

   Some people may experience serious lifestyle changes as they learn to navigate food ingredients, medications, and other potential exposures.

   Melinda's Personal Experience With Alpha-Gal

   Melinda reveals that she also developed alpha-gal syndrome.

   After years of dealing with Lyme disease and other tick-borne illnesses, she noticed alpha-gal-related symptoms following a COVID-19 infection.

   She discusses her physician's hypothesis that changes in immune function may have contributed to the timing of her symptoms.

   However, the interview does not establish that COVID-19 caused her alpha-gal syndrome.

   Her experience reinforces the importance of further research into tick-associated allergies and immune responses.

   Why the Lone Star Tick Is an Important Public Health Concern

   Rich and Melinda discuss the aggressive behavior of lone star ticks.

   Unlike some tick species that primarily wait on vegetation for a host, lone star ticks can actively move toward potential hosts.

   Rich recalls observing this behavior firsthand after removing a lone star tick from his body.

   He describes placing the tick on his bathroom sink and watching it repeatedly move toward him.

   The conversation highlights why tick prevention matters even during ordinary outdoor activities.

   Lone star ticks are associated with several health concerns, including ehrlichiosis and alpha-gal syndrome.

   Their expanding geographic distribution has increased attention to prevention, surveillance, and public education.

   From Bedridden Lyme Patient to Congressional Advocate

   One of the most inspiring parts of Melinda's story is how she began advocating while severely ill.

   She recalls lying in bed and writing letters to elected officials.

   Even when she lacked the energy to travel or participate in traditional advocacy activities, she found ways to make her voice heard.

   She contacted senators, representatives, and public health officials to explain the challenges patients were experiencing.

   Eventually, Melinda traveled to Washington, D.C., to participate in congressional meetings.

   She remembers feeling nervous during her first visits.

   However, an interaction with former Missouri Senator Roy Blunt helped reinforce the importance of her work.

   He encouraged her by explaining that lawmakers need to hear directly from constituents about the challenges affecting their communities.

   That experience strengthened Melinda's commitment to advocacy.

   Today, she encourages other patients and caregivers to share their stories with elected officials.

   If lawmakers don't hear about the problems patients face, they may never fully understand the need for change.

   What Is Center for Lyme Action?

   Center for Lyme Action is a national advocacy organization working to increase federal funding and advance policy solutions for Lyme disease, alpha-gal syndrome, and other tick-borne conditions.

   Its work focuses on:

   • Increasing federal investment in tick-borne disease research
   • Improving diagnostic tools and treatment options
   • Supporting prevention and public health surveillance
   • Educating members of Congress
   • Advocating for patients and caregivers
   • Strengthening state-level advocacy networks
   • Encouraging collaboration among researchers, healthcare professionals, and policymakers

   Melinda explains that Center for Lyme Action began with approximately 30–40 advocates participating in its early congressional outreach efforts.

   By the 2025 ILADS Conference, she reports that the network had grown to more than 10,000 advocates nationwide.

   She now helps organize and strengthen those state-level teams.

   The organization's goal is to turn individual patient experiences into coordinated national advocacy.

   How Federal Advocacy Helps Lyme Disease Patients

   Rich asks an important question: How does federal advocacy actually help individual patients get better?

   Melinda explains that advocacy can influence patient care in several ways.

   1. Increasing Funding for Lyme Disease Research

   Federal funding supports scientific investigations into Lyme disease and other tick-borne illnesses.

   Research can contribute to improvements in:

   • Diagnostic testing
   • Understanding persistent symptoms
   • Treatment approaches
   • Prevention strategies
   • Disease surveillance
   • Medical education
   • Recognition of additional tick-borne conditions

   Melinda discusses the substantial growth in federal attention and research funding that advocates have helped encourage.

   She references cumulative investments approaching half a billion dollars, although the interview does not specify the exact programs or years included in that figure.

   Her larger point is that organized patient advocacy can help direct public resources toward scientific questions that matter to patients.

   2. Giving Patients a Voice

   Melinda believes advocacy provides patients with an opportunity to influence the systems that affect their lives.

   People who feel isolated by chronic illness can connect with others who understand their experiences.

   They can share stories, contact lawmakers, and participate in efforts to improve public policy.

   For some patients, advocacy becomes an important source of purpose and connection.

   3. Supporting Research, Medical Education, and Patient Access

   Rich discusses the challenges physicians may face when caring for patients with complex or persistent symptoms.

   He expresses concern that professional, regulatory, and legal uncertainty may discourage some clinicians from working with these patients.

   Melinda agrees that advocacy is important at both the state and federal levels.

   Their discussion explores how research, medical education, and healthcare policy can influence clinical practice.

   The goal is to improve access to informed, compassionate, evidence-based care while maintaining appropriate patient safety protections.

   Five Federal Tick-Borne Disease Bills Discussed at ILADS 2025

   Melinda explains that Center for Lyme Action was supporting five major legislative proposals during the 2025 congressional session.

   She describes the simultaneous consideration of these bills as an important moment for the tick-borne disease community.

   1. Kay Hagan Tick Act Reauthorization

   H.R. 4348 — Kay Hagan Tick Act Reauthorization

   The original Kay Hagan Tick Act established a federal framework for improving the prevention and control of vector-borne diseases.

   The reauthorization proposal aimed to continue and strengthen these efforts.

   Key priorities included:

   • Supporting a national vector-borne disease strategy
   • Continuing regional Centers of Excellence
   • Providing grants to state and local health departments
   • Strengthening disease surveillance
   • Improving prevention and public health responses

   Melinda emphasizes the importance of directing resources to state health departments and research institutions.

   Update since the interview: The Kay Hagan Tick Act reauthorization was signed into law on September 30, 2026, extending relevant programs through 2030.

   2. Alpha-gal Allergen Inclusion Act

   H.R. 1178 — Alpha-gal Allergen Inclusion Act

   This legislation addresses challenges faced by people with alpha-gal syndrome.

   The proposal seeks to expand federal allergen-labeling requirements to include alpha-gal.

   Melinda explains that people with alpha-gal syndrome may encounter mammalian-derived ingredients in foods, medications, cosmetics, and other products.

   Improved labeling could help patients identify relevant ingredients and make more informed decisions.

   3. Stamp Out Lyme Disease Act

   H.R. 4981 — Stamp Out Lyme Disease Act

   The Stamp Out Lyme Disease Act proposes creating a special postage stamp to generate funding for Lyme disease research.

   Revenue from the semipostal stamp would support research through the National Institutes of Health.

   Melinda and Rich discuss the proposal as a creative way to raise awareness while generating additional research funding.

   4. BITE Act

   H.R. 4980 — Battling Infections Transmitted by Ticks and Exposure Act

   The BITE Act proposes improving public awareness of tick-borne and other vector-borne disease risks.

   Melinda describes the possibility of location-based alerts that could notify people when they enter areas associated with increased tick exposure.

   The proposed system would help communicate relevant public health information and support prevention efforts.

   5. Tick Identification Pilot Program Act

   H.R. 4979 — Tick Identification Pilot Program Act

   This proposal would support state-level tick identification programs.

   Such programs could help residents identify ticks and better understand potential exposure risks.

   Rich connects the legislation to existing educational resources, including the University of Rhode Island's TickEncounter Resource Center.

   He also discusses Tick Boot Camp's Tick Bite Blueprint, which provides practical guidance for people who discover an attached tick.

   The discussion highlights the value of making tick identification and prevention resources more widely available.

   Why Tick Identification Matters

   Different tick species are associated with different pathogens and health risks.

   For example:

   • Blacklegged ticks: Associated with Lyme disease, anaplasmosis, and babesiosis.
   • Lone star ticks: Associated with ehrlichiosis and alpha-gal syndrome.
   • American dog ticks: Associated with certain spotted fever group infections.

   Identifying a tick can help guide conversations with healthcare professionals.

   However, tick identification does not establish that a tick transmitted an infection.

   Similarly, a negative test of a removed tick does not necessarily rule out exposure to another infected tick.

   The interview emphasizes education, prevention, and informed medical decision-making.

   Meghan Bradshaw and the Growth of Federal Lyme Advocacy

   Melinda credits Meghan Bradshaw, Executive Director of Center for Lyme Action, with helping lead the organization's federal advocacy efforts.

   She describes Meghan as a central presence in Washington, D.C., building relationships with lawmakers and coordinating legislative priorities.

   Melinda also explains that continued organizational growth requires additional resources.

   As more patients become involved, Center for Lyme Action needs stronger infrastructure, sponsorships, and additional staff to support its state teams and federal initiatives.

   The organization's long-term goal is to transform grassroots participation into sustained public policy change.

   Learn more about Meghan's personal journey through Tick Boot Camp's interview with Meghan Bradshaw, The Bionic Woman.

   How Lyme Disease Patients Can Get Involved in Advocacy

   One of the most empowering messages from Melinda's story is that advocacy does not require perfect health.

   She began writing to lawmakers while bedridden.

   Her experience demonstrates that patients can participate in meaningful ways that match their abilities and circumstances.

   Opportunities include:

   • Joining a Lyme disease advocacy organization
   • Contacting elected representatives
   • Sharing personal experiences with policymakers
   • Participating in virtual advocacy events
   • Supporting research initiatives
   • Connecting with state-level advocacy teams
   • Helping educate friends, family members, and communities

   Rich emphasizes that chronic illness often changes a person's sense of identity and purpose.

   Advocacy can provide an opportunity to turn difficult experiences into support for others.

   Explore ways to participate through Center for Lyme Action.

   Why Patient Stories Matter

   Tick Boot Camp was built around the belief that sharing patient experiences can educate, validate, and inspire others.

   Rich explains that storytelling serves two important purposes.

   First, it helps people recognize that they are not alone.

   Second, it gives individuals an opportunity to contribute to something larger t

7. Episode 624: FDA-Cleared Lyme Disease Testing: What's New at IGeneX? – Dr. Jyotsna Shah | LIVE from ILADS

   08.11.202615 Min.Staffel 1 · Folge 624Als Nächstes

   Could a major breakthrough in Lyme disease testing help more patients get answers sooner? What does FDA clearance mean for people who have struggled with negative Lyme tests despite ongoing symptoms? In this …

   Shownotes

   Could a major breakthrough in Lyme disease testing help more patients get answers sooner? What does FDA clearance mean for people who have struggled with negative Lyme tests despite ongoing symptoms?

   In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reunites with Dr. Jyotsna Shah, PhD, President and Laboratory Director of IGeneX, to discuss an important development in Lyme disease diagnostics: FDA clearance of the iDart Lyme IgM and IgG ImmunoBlot test kits.

   Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores how expanded Borrelia antigen coverage, updated antibody interpretation criteria, and single-step immunoblot testing could improve access to Lyme disease diagnostics.

   Dr. Shah also discusses the importance of testing for additional tick-borne infections, including Babesia, Bartonella, Anaplasma, Ehrlichia, and Rickettsia.

   The interview addresses several questions that matter to the Lyme disease community:

   • What does FDA clearance mean for IGeneX Lyme disease testing?
   • Why are Lyme Western blot bands 31 and 34 important?
   • How do IGeneX ImmunoBlot tests differ from conventional two-tier Lyme testing?
   • What is the difference between Lyme Borrelia and tick-borne relapsing fever Borrelia?
   • Why might someone with Lyme-like symptoms test negative for Lyme disease?
   • Are Babesia and other tick-borne infections becoming more common?
   • Will FDA clearance make specialized Lyme testing easier to obtain through insurance?

   The biggest takeaway: Dr. Shah believes broader diagnostic tools and improved access to testing could help more patients receive timely answers and appropriate medical care.

   Meet Dr. Jyotsna Shah, PhD

   Dr. Jyotsna S. Shah, PhD, is President and Laboratory Director of IGeneX, a specialty laboratory based in Milpitas, California, focused on diagnostic testing for Lyme disease and other tick-borne infections.

   She has spent decades working to advance laboratory methods for detecting infectious diseases, including Borrelia and Babesia.

   Dr. Shah has also been involved in developing and evaluating immunoblot testing, fluorescence in situ hybridization (FISH), and other laboratory techniques.

   Her work includes efforts to improve the detection of tick-borne pathogens that may not be identified through commonly used testing approaches.

   During this interview, she shares updates on IGeneX's diagnostic technology, FDA clearance, and efforts to expand testing availability.

   Learn more about the laboratory at the official IGeneX website.

   FDA Clearance for Lyme IgM and IgG ImmunoBlot Tests

   The biggest announcement in this interview is the FDA clearance of two Lyme disease immunoblot test kits.

   The iDart Lyme IgG ImmunoBlot Kit received FDA clearance in 2024.

   The iDart Lyme IgM ImmunoBlot Kit received FDA clearance in 2025.

   Both kits are manufactured by ID-FISH Technology, Inc., which has a licensing relationship with IGeneX.

   The tests use recombinant antigens from multiple Borrelia species and strains to detect antibodies associated with Lyme disease.

   Dr. Shah explains that the FDA clearance process included evaluation of the tests' antigen coverage and interpretation criteria.

   She views the clearances as an important milestone for Lyme disease diagnostics.

   Importantly, the clearances apply to the specific iDart immunoblot kits, not every test offered by IGeneX.

   Read the official announcement about FDA clearance of the Lyme IgM and IgG ImmunoBlots.

   What Is a Lyme Disease ImmunoBlot?

   An immunoblot is a laboratory test that detects antibodies directed against specific proteins, called antigens.

   When someone is exposed to Borrelia bacteria, their immune system may produce antibodies against different bacterial proteins.

   An immunoblot measures antibody reactivity to selected antigens.

   Dr. Shah discusses two major antibody classes:

   IgM antibodies: Often appear earlier during an immune response.

   IgG antibodies: Generally develop later and may remain detectable long after an infection.

   Both can provide useful information when interpreted in the context of symptoms, exposure history, and other clinical findings.

   However, antibody results alone cannot reliably determine whether an infection is currently active, and IgM results can be misleading when used to evaluate symptoms of long duration.

   Why Lyme Disease Testing Bands 31 and 34 Matter

   One of the most important developments discussed is the inclusion of bands 31 and 34 in the FDA-cleared immunoblot kits.

   These bands correspond to Borrelia outer surface proteins:

   • Band 31: Outer surface protein A, or OspA
   • Band 34: Outer surface protein B, or OspB

   Dr. Shah explains that IGeneX has long considered these bands important when evaluating Lyme disease antibody responses.

   She emphasizes that the FDA-cleared tests include these antigens in their interpretation criteria.

   The kits use antigen-group interpretation rules rather than simply adopting conventional CDC-associated Western blot band counts.

   This is significant because different diagnostic methods may recognize different antibody patterns.

   However, no individual band establishes a Lyme disease diagnosis by itself.

   Positive antibody findings must be interpreted alongside clinical information, and some bands can have limitations involving cross-reactivity or prior vaccination.

   Learn more about the IGeneX FDA-cleared immunoblot technology.

   Single-Step Lyme Testing vs. Traditional Two-Tier Testing

   Rich asks Dr. Shah to explain how the new immunoblot approach differs from conventional Lyme disease testing.

   Traditional standard two-tier testing generally involves two sequential steps.

   The first test screens for antibodies.

   If the screening result meets the laboratory's criteria, a second test is performed.

   Depending on the testing algorithm, that second test may be an immunoblot or another antibody assay.

   Dr. Shah explains that the FDA-cleared iDart ImmunoBlot kits are designed to function as stand-alone antibody tests within their authorized intended use.

   This means a laboratory does not necessarily need to follow the same two-step workflow when using these particular kits.

   She believes this could simplify testing and make broader diagnostic technology available to additional laboratories.

   Single-step testing does not eliminate the possibility of false-negative or false-positive results, and test selection should remain guided by clinical circumstances.

   Why IGeneX Uses Antigens From Multiple Borrelia Species

   Dr. Shah emphasizes the importance of recognizing diversity among Borrelia bacteria.

   Lyme disease is associated with multiple Borrelia species, including species found in North America and Europe.

   Different species and strains may vary in their antigenic characteristics.

   Dr. Shah explains that IGeneX incorporates antigens from multiple species and strains to broaden antibody recognition.

   She describes the laboratory's approach as particularly relevant for patients with potential exposure in different geographic regions.

   The conversation also distinguishes Lyme disease Borrelia from tick-borne relapsing fever Borrelia.

   These are related groups of bacteria, but they are associated with distinct infections and require appropriate diagnostic interpretation.

   Lyme Borrelia vs. Tick-Borne Relapsing Fever Borrelia

   During the interview, Dr. Shah describes IGeneX testing for two different groups of Borrelia.

   Lyme disease Borrelia: She discusses testing that incorporates antigens representing nine Borrelia species associated with Lyme disease.

   Tick-borne relapsing fever Borrelia: She describes a separate testing approach involving eight species.

   Together, these represent 17 species considered across the two testing categories discussed in the interview.

   Dr. Shah emphasizes that patients with similar symptoms may have different infections.

   She also explains that some people with tick-borne relapsing fever Borrelia may not describe the classic recurring fever pattern traditionally associated with the disease.

   An important distinction is that the FDA-cleared Lyme ImmunoBlot kits should not be described as one FDA-cleared test that detects all 17 species.

   The interview discusses separate Lyme disease and relapsing fever testing categories.

   Could Tick-Borne Relapsing Fever Be Missed in Patients With Lyme-Like Symptoms?

   Dr. Shah describes her laboratory's experience evaluating patients who have symptoms suggestive of tick-borne illness but negative Lyme disease testing.

   She explains that some have shown evidence of exposure to relapsing fever Borrelia.

   The conversation also touches on laboratory findings involving selected patients reporting Morgellons symptoms.

   Dr. Shah describes identifying relapsing fever Borrelia-related findings in some of these patients.

   These observations are part of her laboratory experience and do not establish that relapsing fever Borrelia causes Morgellons or explains persistent symptoms in all patients.

   They do, however, highlight why clinicians may consider alternative diagnoses when evaluating unexplained symptoms and relevant exposure histories.

   Why Lyme Disease Testing Should Consider Co-Infections

   Rich and Dr. Shah discuss the growing recognition of infections that can occur alongside Lyme disease.

   A tick may carry more than one pathogen, and people may also experience multiple exposures over time.

   Dr. Shah explains that patients with suspected tick-borne illness may need evaluation for additional pathogens depending on their symptoms and risk factors.

   She discusses several groups of organisms:

   • Borrelia: Bacteria associated with Lyme disease and relapsing fever.
   • Babesia: Parasites that infect red blood cells and cause babesiosis.
   • Bartonella: Bacteria associated with several human diseases, although the role of ticks in transmitting human Bartonella infection remains unproven.
   • Anaplasma: Bacteria responsible for anaplasmosis.
   • Ehrlichia: Bacteria responsible for ehrlichiosis.
   • Rickettsia: Bacteria associated with several tick-borne illnesses, including spotted fever group infections.

   Dr. Shah believes broader testing panels can help identify infections that might otherwise be overlooked.

   However, comprehensive panels are not automatically necessary for every patient.

   Testing decisions should reflect symptoms, geographic exposure, clinical findings, and the performance characteristics of each assay.

   Is Babesia Becoming More Common?

   One of the most interesting discussions concerns Babesia, a parasite that infects red blood cells.

   Rich shares observations from Tick Boot Camp interviews suggesting that Babesia is being discussed more frequently among patients with complex tick-borne illnesses.

   Dr. Shah agrees that Babesia has become increasingly important in laboratory testing.

   She references data from the IGeneX patient population in which Babesia findings were particularly common.

   These laboratory observations do not necessarily represent prevalence in the general population.

   Rich asks whether the apparent increase reflects more infections or improved testing.

   Dr. Shah believes both may contribute, but emphasizes that improved diagnostic methods have helped identify infections that were previously overlooked.

   Dr. Shah's Role in Babesia Testing in New York

   Dr. Shah shares a story about her work with Dr. Richard Horowitz around 1999.

   She recalls helping bring greater attention to Babesia in New York through laboratory testing.

   At that time, she was working with Babesia FISH testing, a technique designed to identify genetic material within organisms in patient samples.

   She describes discussing Babesia findings with researchers familiar with the parasite.

   Her experience illustrates how diagnostic methods and scientific collaboration can contribute to increased recognition of tick-borne diseases.

   Dr. Shah believes that improved testing remains an important factor in identifying Babesia infections.

   For additional perspectives on Lyme disease and co-infections, explore Tick Boot Camp's featured profile of Dr. Richard Horowitz.

   What Animals Carry Babesia?

   Rich asks Dr. Shah about the relationship between Babesia and wildlife populations.

   The conversation includes deer, horses, sheep, dogs, cats, and other animals.

   Dr. Shah explains that Babesia organisms occur in multiple animal species.

   However, different Babesia species have different host relationships.

   For human babesiosis caused by Babesia microti in the northeastern United States, white-footed mice and certain other small mammals are important reservoir hosts.

   Deer play an important role in supporting blacklegged tick populations, but they are not considered the primary reservoir for B. microti.

   This distinction matters when discussing how babesiosis is maintained and transmitted in the environment.

   Why FDA Clearance Could Improve Access to Lyme Testing

   Near the end of the interview, Rich asks whether FDA clearance could make IGeneX testing more accessible through health insurance.

   Dr. Shah explains that obtaining clearance was an important step toward expanding availability.

   She discusses efforts to secure billing codes and work with Medicare and other insurers.

   At the time of recording, these efforts were ongoing.

   Dr. Shah hopes the technology will eventually become available through more local laboratories rather than requiring patients to rely exclusively on specialized testing facilities.

   This could potentially reduce barriers involving geography, laboratory access, and insurance reimbursement.

   However, FDA clearance does not automatically guarantee insurance coverage.

   Coverage depends on factors including the insurer, medical necessity policies, billing codes, laboratory participation, and the specific test ordered.

   The Importance of Early and Accurate Diagnosis

   Dr. Shah repeatedly emphasizes the importance of identifying Lyme disease and other tick-borne infections as early as possible.

   Earlier diagnosis can help patients receive appropriate treatment and reduce the risk of certain complications.

   She believes diagnostic tools that recognize a broader range of antibody responses may contribute to that goal.

   At the same time, no Lyme antibody test can detect every infection, particularly in the earliest stages before antibodies have developed.

   Patients with a clinically characteristic erythema migrans rash may be diagnosed and treated without waiting for laboratory confirmation.

   Testing is one part of a broader medical evaluation.

   Key Takeaways

   • IGeneX-associated Lyme ImmunoBlot technology achieved FDA clearance. The iDart Lyme IgG kit was cleared in 2024 and the IgM kit in 2025.
   • Bands 31 and 34 are included. These represent OspA and OspB antigens used in the tests' interpretation.
   • The kits use antigens from multiple Borrelia species and strains. This is intended to broaden antibody detection.
   • The FDA-cleared kits are designed as stand-alone immunoblot tests. They differ from traditional two-tier testing workflows.
   • Lyme disease and tick-borne relapsing fever are distinct infections. Dr. Shah discusses separate testing approaches for these Borrelia groups.
   • Babesia remains an important diagnostic consideration. Dr. Shah believes improved testing has contributed to increased recognition.
   • Other infections may coexist with Lyme disease. Clinical evaluation may include Anaplasma, Ehrlichia, Babesia, and other pathogens when appropriate.
   • Multiple tick exposures can complicate medical histories. Some patients may acquire different infections over time.
   • FDA clearance does not guarantee insurance reimbursement. Dr. Shah describes ongoing efforts to expand coverage.
   • Earlier diagnosis matters. Dr. Shah hopes wider access to diagnostic technology will help patients receive timely care.

   Learn More About IGeneX and Lyme Disease Testing

   For additional information about the technologies discussed in this interview, explore:

   • IGeneX – Official Laboratory Website
   • FDA Clearance of Lyme IgM and IgG ImmunoBlot Kits
   • IGeneX FDA-Cleared Lyme Testing Information
   • IGeneX Tick-Borne Disease Test Directory
   • Tick Boot Camp – Understanding Lyme Disease Testing

   About This LIVE from ILADS Interview

   Recorded at the 2025 ILADS Conference in San Antonio, Texas, this interview features Dr. Jyotsna Shah, PhD, President and Laboratory Director of IGeneX.

   Rich and Dr. Shah discuss the FDA clearance of Lyme ImmunoBlot test kits, the significance of bands 31 and 34, differences between traditional two-tier testing and stand-alone immunoblots, expanded Borrelia antigen coverage, and the importance of considering additional tick-borne infections.

   They also explore Babesia testing, the role of wildlife in tick-borne disease transmission, and the possibility of broader access to specialized testing through insurance and local laboratories.

   Discover more interviews with leading physicians and researchers through Tick Boot Camp's LIVE from ILADS podcast series.

   Better testing can help create a path toward earlier answers, informed treatment decisions, and better patient care.

8. Episode 623: From Bed-Bound to Ms Great Britain: Kirstie Haysman’s Lyme Disease Recovery Story

   07.11.20261 Std. 20 Min.Staffel 1 · Folge 623Als Nächstes

   Read transcriptKirstie Haysman went from being bed-bound, wheelchair-dependent, unable to care for herself, and wondering whether she would ever recover to walking across a pageant stage and becoming Ms Great …

   Shownotes

   Read transcript

   Kirstie Haysman went from being bed-bound, wheelchair-dependent, unable to care for herself, and wondering whether she would ever recover to walking across a pageant stage and becoming Ms Great Britain 2025/26.

   But the crown represents much more than a pageant victory.

   In this deeply personal episode of the Tick Boot Camp Podcast, Kirstie shares the decades-long health journey that preceded it: unexplained symptoms beginning in childhood, multiple diagnoses, years of immunosuppressive treatment, debilitating joint and neurological symptoms, frightening intrusive thoughts, psychiatric hospitalization, and encounters with more than 40 doctors before Lyme disease finally entered the conversation.

   Kirstie takes listeners through the moment a stranger in a hospital waiting room asked a life-changing question — “Do you think you’ve got Lyme disease?” — and how that question ultimately led her to Mexico, Dr. Omar Morales, testing for Lyme and other tick-borne infections, and the validation she had spent years searching for.

   Her story does not end with diagnosis or antimicrobial treatment. Kirstie describes the many approaches she explored, the enormous financial and emotional cost of chronic illness, and why nervous-system regulation, self-hypnosis, visualization, purpose, and changing the story she told herself eventually became important pieces of her personal recovery.

   Today, Kirstie is using the visibility that comes with being Ms Great Britain to advocate for people with Lyme disease and other complex chronic illnesses — including her own daughter.

   Years of Symptoms and Misdiagnosis

   Looking back, Kirstie remembers being an unwell child with chronic exhaustion, recurring infections, severe “growing pains,” insomnia, low iron, and other unexplained symptoms.

   Her health deteriorated significantly as an adult.

   After testing positive for ANA following the birth of her daughter, Kirstie says doctors initially suspected lupus. Over the years, she received or was considered for numerous diagnoses, including rheumatoid arthritis, connective tissue disease, Raynaud’s, fibromyalgia, osteopenia, osteoporosis, and other conditions.

   She was treated with steroids for approximately 12 years and later received additional immunosuppressive medications. Instead of recovering, Kirstie says she became progressively sicker.

   Eventually, the joints in her hands became so damaged that she could no longer perform her work as a chiropodist. She lost her business, her independence, and ultimately her ability to care for herself.

   When Lyme Disease Affected Her Brain

   Some of the most difficult parts of Kirstie’s illness were neurological and psychiatric.

   She describes severe insomnia, panic, OCD symptoms, brain fog, intrusive thoughts, overwhelming anxiety, and periods when she felt as though her own mind was no longer under her control.

   At one of her lowest points, she entered a psychiatric hospital because she and her family believed she was experiencing a severe mental health crisis.

   Kirstie emphasizes an important distinction: she wanted to live, but was terrified by intrusive thoughts telling her to harm herself.

   Her experience is an important reminder that patients experiencing psychiatric or neurological symptoms deserve to be heard, taken seriously, and thoroughly evaluated rather than dismissed.

   The Stranger Who Changed Everything

   After collapsing during another hospital visit, Kirstie says she felt dismissed by a physician who characterized her symptoms as attention-seeking.

   Then another woman in the waiting room approached her with a question Kirstie had never been asked before:

   Could this be Lyme disease?

   Kirstie had barely heard of Lyme.

   She went home and began researching. As she read patient stories and symptom lists, she recognized experiences she had been struggling to explain for years.

   When she subsequently requested Lyme testing, Kirstie says she encountered resistance because she did not remember a tick bite or an erythema migrans rash.

   That experience ultimately pushed her outside the healthcare system she had relied upon throughout her life.

   Traveling to Mexico for Answers

   The woman Kirstie met in the hospital was preparing to travel to Mexico for Lyme disease care and encouraged Kirstie to speak with Dr. Omar Morales.

   That conversation changed the direction of Kirstie’s journey.

   Kirstie describes Dr. Morales as one of the first physicians who listened to her entire history and made her feel that her experiences were real and worth investigating.

   She traveled to Mexico, where she says specialty testing identified Lyme disease along with infections including Bartonella, Babesia, and Anaplasma.

   Receiving those results brought two very different emotions.

   There was relief: after years of searching, Kirstie finally felt she had an explanation.

   But there was also fear. She had spent nights reading stories from people who remained chronically ill and suddenly wondered whether she would ever recover — and how she could possibly afford the care she believed she needed.

   Tick Boot Camp previously interviewed Dr. Morales about his approach to complex Lyme disease in Lyme Mexico: An Interview with Dr. Omar Morales.

   Stem Cells, Plasmapheresis, Ozone and Antibiotics

   Kirstie ultimately pursued treatment at another facility in Mexico, where she reports receiving interventions including stem cell procedures, plasmapheresis, and ozone therapy.

   She describes experiencing meaningful improvement, including increased energy and changes in the mobility of her severely affected hands.

   After returning to the United Kingdom, however, her health declined again.

   Kirstie later found a UK physician who prescribed an extended combination antibiotic protocol. She credits that period of treatment with helping resolve some of her most frightening intrusive thoughts and neurological symptoms, although gastrointestinal complications eventually led her to discontinue antibiotics.

   Over the course of her illness, Kirstie estimates that she spent approximately £70,000 pursuing recovery.

   She experimented with dramatically different diets and explored numerous conventional, integrative, and alternative approaches.

   Her experience illustrates a reality familiar to many people with complex chronic illness: the search for answers can become financially, physically, and emotionally consuming.

   From Wheelchair and Bed-Bound to Rebuilding Her Life

   Despite everything she had tried, Kirstie eventually reached another devastating low.

   She describes periods when she could barely move, severe pain throughout her body, swollen joints, weakness and loss of sensation in her legs, bladder problems, and dependence on carers for basic daily activities.

   She could no longer work.

   She was missing important moments in her daughter's childhood.

   And she felt that the person she had once been had disappeared.

   That was when Kirstie began examining another part of recovery: her nervous system and the way she thought about her body.

   Primal Trust, Nervous-System Regulation and Self-Hypnosis

   Kirstie discovered the work of Dr. Cathleen King and Primal Trust, which introduced her to concepts involving nervous-system regulation, limbic system retraining, and moving the body away from a persistent state of perceived danger.

   This became an important shift in Kirstie’s personal recovery strategy.

   Rather than continually reinforcing the message that her body was broken and needed another intervention, she began practicing self-hypnosis and visualization.

   From bed, Kirstie imagined herself walking.

   She imagined herself healthy.

   And she imagined herself standing on the Miss Great Britain stage while an audience applauded.

   She even played recordings of crowds cheering while visualizing that future.

   Kirstie is careful to describe this as part of a much larger journey that also included extensive medical treatment. Looking back, she believes she encountered nervous-system work at the point when she was finally ready to embrace it.

   Her experiences also inspired her to train as a hypnotherapist and help others explore the relationship between thoughts, emotions, nervous-system regulation, and personal well-being.

   Kirstie has now launched Queen of Consciousness, her hypnotherapy website, where listeners can learn more about her work and approach.

   Learn more about nervous-system regulation and chronic illness in Tick Boot Camp’s interview with Dr. Cathleen King: Primal Trust.

   “Bed Bound to Beauty Queen”

   Years earlier, Kirstie had competed in Miss Great Britain after becoming Miss Hertfordshire.

   When her illness later became severe and her story received widespread media attention, Miss Great Britain reached out with a message of encouragement: if she recovered enough, she should consider returning.

   For someone lying in bed wondering what her future would look like, that invitation became a goal.

   Kirstie created a social media identity around “Bed Bound to Beauty Queen” and gave herself 365 days to get back onto the pageant stage.

   Progress came gradually.

   First came standing.

   Then a Zimmer frame.

   Then walking outside.

   Then a walking stick.

   Finally, Kirstie returned to the stage.

   In 2024, only months after leaving her wheelchair, she returned to Miss Great Britain and placed second runner-up in the Ms Great Britain category.

   One year later, she returned again.

   This time, Kirstie Haysman became Ms Great Britain 2025/26.

   For Kirstie, the crown represented the future she had visualized during some of the darkest days of her illness.

   Turning the Crown Into Lyme Disease Advocacy

   Kirstie promised that if she recovered, she would use her voice to help other people facing Lyme disease.

   She has made that promise a central part of her reign as Ms Great Britain.

   Her advocacy has included speaking at the ILADS European Scientific Conference, traveling to the United States with fellow UK Lyme advocate Hannah Green, visiting Lyme, Connecticut and the Plum Island area, participating in Lyme community events, and attending the Lyme Warrior 10th Anniversary Gala, where Tick Boot Camp first met Kirstie in person.

   She and Hannah also spent Lyme Disease Awareness Month wearing green every day as a conversation starter about Lyme disease.

   Kirstie has additionally launched a UK Parliament petition calling for a review of Lyme disease testing, part of her effort to encourage earlier recognition and reduce the kind of diagnostic journey she experienced.

   Lymelight: Making Disability Visible

   Kirstie has also collaborated with mobility-aid company NeoWalk on Lymelight, a clear acrylic walking stick featuring vivid lime-green stripes.

   The design grew out of Kirstie’s experience with Lyme disease and her belief that mobility aids do not have to be hidden.

   For Kirstie, the walking stick that once represented disability can instead become a visible conversation starter about Lyme disease, resilience, and identity.

   Learn more about the Lymelight walking stick from NeoWalk.

   Lyme Disease Across Generations

   One of the most emotional themes in Kirstie’s story is her concern about Lyme disease across generations of her family.

   She discusses the unexplained illnesses experienced by her grandmother and mother, questions whether she may have been exposed before birth, and shares that her daughter has also been diagnosed with Lyme disease.

   Kirstie believes congenital transmission may help explain portions of her family's medical history and says advocating for her daughter is one of the reasons she remains so committed to Lyme disease awareness.

   The conversation explores these possibilities as part of Kirstie’s personal and family history rather than assuming that every proposed transmission route discussed during the interview has been established in her individual case.

   Finding Purpose After Chronic Illness

   Perhaps the most powerful part of Kirstie’s story is not the crown itself.

   It is what the crown represents.

   Chronic illness took away her career, independence, mobility, confidence, and the identity she had built for herself.

   Recovery required Kirstie to build a new one.

   She now describes herself not simply as someone who has been sick, but as someone who can use what she experienced to help others feel seen.

   She has retrained in hypnotherapy and is developing her work around trauma, limiting beliefs, nervous-system regulation, and pain management. Through her newly launched Queen of Consciousness website, Kirstie is sharing this next chapter of her journey and her passion for helping others.

   She has also written Bed Bound to Beauty Queen, a children's story inspired by disability, hope, and pursuing dreams despite enormous obstacles. The book follows a young girl facing mobility challenges who dreams of becoming a beauty queen, reflecting Kirstie's own experience of rebuilding her life and pursuing a goal that once seemed impossible.

   Listeners can find Kirstie's children's book here:

   • Bed Bound to Beauty Queen — Amazon USA
   • Bed Bound to Beauty Queen — Amazon UK

   Her message to the Lyme community is simple:

   A diagnosis does not have to determine your destiny.

   In This Episode, You’ll Learn

   • How Kirstie went from Miss Hertfordshire and pageantry to severe chronic illness and eventually Ms Great Britain
   • Why she believes symptoms of illness may have been present since childhood
   • How lupus, rheumatoid arthritis, fibromyalgia and other diagnoses became part of her medical journey
   • What happened after years of steroids and immunosuppressive treatment
   • How severe insomnia, OCD symptoms, anxiety and intrusive thoughts affected her life
   • Why she was admitted to a psychiatric hospital
   • How a stranger in a hospital waiting room first introduced her to Lyme disease
   • Why not remembering a tick bite or bullseye rash became an obstacle to testing
   • How Kirstie eventually connected with Dr. Omar Morales in Mexico
   • Her reported diagnoses involving Lyme disease, Bartonella, Babesia and Anaplasma
   • Her experiences with antibiotics, stem cells, plasmapheresis, ozone and other interventions
   • The financial burden of pursuing treatment for complex chronic illness
   • Why Kirstie eventually focused more heavily on nervous-system regulation
   • How Primal Trust, self-hypnosis and visualization became part of her personal recovery strategy
   • How she progressed from bed-bound to a Zimmer frame, walking stick and pageant stage
   • Why becoming Ms Great Britain was about far more than winning a crown
   • How she is using her title to raise Lyme disease awareness internationally
   • Her advocacy around Lyme disease testing and congenital Lyme
   • How she turned her experience into a new career in hypnotherapy through Queen of Consciousness
   • Why she wrote the children's book Bed Bound to Beauty Queen
   • Why purpose, identity, community and hope became essential parts of her recovery

   Connect With Kirstie Haysman

   Learn more about Kirstie's hypnotherapy work, personal journey, and approach to well-being through Queen of Consciousness.

   Discover her children's book, Bed Bound to Beauty Queen, available through Amazon USA and Amazon UK.

   More From Tick Boot Camp

   Explore more stories of recovery, clinicians, researchers, advocates, and people working to improve understanding of Lyme and tick-borne disease on the Tick Boot Camp Podcast.

   For listeners who are struggling to understand Lyme disease testing and why different tests can produce different results, visit the Tick Boot Camp guide to Lyme disease testing.

   Transkript

9. Episode 622: 12 Steps to Healing from Chronic Lyme Disease – Dr. Chris Winfrey on Faith, Trauma & Community | LIVE from ILADS

   06.11.202626 Min.Staffel 1 · Folge 622Als Nächstes

   What if healing from chronic Lyme disease requires more than finding the right medication? What if learning to stop fighting yourself, reconnect with your purpose, and build meaningful relationships could …

   Shownotes

   What if healing from chronic Lyme disease requires more than finding the right medication? What if learning to stop fighting yourself, reconnect with your purpose, and build meaningful relationships could become an important part of your recovery journey?

   In this powerful LIVE from ILADS interview, Tick Boot Camp co-host Rich Johannesen reunites with fan-favorite Dr. Chris Winfrey, MD, a board-certified psychiatrist, psychoanalyst, and ILADS board member, to explore the spiritual, emotional, and psychological dimensions of healing from Lyme disease and complex chronic illness.

   Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation introduces Dr. Winfrey's 12 Steps for Chronic Illness, a framework inspired by addiction recovery programs, his professional experience in psychiatry, his personal health journey, and the role faith has played throughout his life.

   Dr. Winfrey challenges the belief that healing must always involve fighting harder. Instead, he encourages patients to explore acceptance, surrender, self-compassion, nervous system regulation, meaningful relationships, and community support.

   The conversation examines several important questions:

   • Why can chronic illness leave patients feeling trapped in fight-or-flight mode?
   • What is the difference between surrendering to reality and giving up on recovery?
   • How can faith, spirituality, and personal purpose support people facing serious illness?
   • Why are self-compassion and forgiveness important when chronic illness changes your life?
   • How can patients rebuild relationships affected by years of suffering?
   • What can the 12-step recovery model teach people living with Lyme disease?

   Dr. Winfrey's central message is that patients deserve more than a life defined by illness. They deserve connection, purpose, compassion, and the opportunity to build a meaningful future while continuing to pursue appropriate medical care.

   Meet Dr. Chris Winfrey, MD

   Dr. Chris Winfrey, MD, is a board-certified psychiatrist and founder of New Image Wellness, a neuropsychiatric practice in New Jersey.

   His work integrates traditional psychiatry, psychoanalysis, functional medicine, environmental medicine, and approaches to complex neurological and psychiatric conditions.

   His clinical interests include:

   • Lyme disease and tick-borne infections
   • PANS/PANDAS
   • Neuropsychiatric symptoms
   • Chronic fatigue and cognitive dysfunction
   • Mold-related health concerns
   • Trauma and post-traumatic stress disorder
   • Brain health and nervous system regulation
   • The relationship between physical illness and mental health

   Dr. Winfrey also serves on the board of ILADS, where he hopes to make complex medical information more understandable and expand awareness of Lyme disease in underserved communities.

   He explains that Lyme disease is sometimes incorrectly perceived as affecting only certain racial or socioeconomic groups.

   One of his goals is to help make education, resources, and conversations about tick-borne illness more accessible.

   Learn more about his background and approach through Tick Boot Camp's featured profile of Dr. Chris Winfrey.

   A Tick Boot Camp Fan Favorite Returns

   Rich opens the interview by welcoming Dr. Winfrey back to the podcast.

   The two originally connected through Tick Boot Camp's LIVE from ILADS interview series.

   Despite the relatively short format of their first conference interview, Dr. Winfrey became one of the podcast's most popular guests.

   He subsequently joined Tick Boot Camp for a longer conversation about Lyme disease, brain health, psychiatric symptoms, and nervous system recovery.

   Rich credits Dr. Winfrey's ability to explain complicated medical concepts in language patients can understand.

   This new interview expands on an important subject they had not previously explored in depth: the spiritual dimension of healing.

   For more from Dr. Winfrey, listen to:

   • Episode 521: Lyme Disease, Brain Health, and Nervous System Recovery
   • Episode 563: At the Frontlines of Chronic Illness – ILADS Expert Panel Webinar

   How Dr. Winfrey's Grandmother Shaped His Understanding of Faith

   Dr. Winfrey begins by honoring his grandmother.

   He shares that he experienced PANDAS during childhood and struggled with behavioral, organizational, and emotional challenges.

   While others doubted his future, his grandmother continued to believe in him.

   She prayed for him and maintained faith that he could overcome the difficulties he was experiencing.

   Dr. Winfrey recalls an especially meaningful childhood memory of his grandmother placing olive oil on his head and praying before he went to school.

   Her belief in him became an important part of his understanding of faith, hope, and perseverance.

   He credits those early experiences with influencing how he now approaches healing.

   What Addiction Recovery Taught Dr. Winfrey About Chronic Illness

   Dr. Winfrey explains that his interest in 12-step programs began long before he developed his chronic illness framework.

   During his early years, he completed community service at an Alcoholics Anonymous facility.

   He listened to people describe their experiences with addiction, recovery, accountability, and personal transformation.

   His understanding deepened during medical school, residency, and subsequent professional training.

   He also worked as a medical director at a drug and alcohol treatment facility.

   Over time, he began recognizing parallels between addiction recovery and the psychological challenges faced by people living with chronic illness.

   Both experiences can involve:

   • Loss of control
   • Fear and uncertainty
   • Changes in identity
   • Shame and isolation
   • Strained relationships
   • Difficulty accepting reality
   • The need for community support
   • Rebuilding meaning and purpose

   Drawing on these observations, Dr. Winfrey developed his 12 Steps for Chronic Illness.

   He describes the framework as a way to help patients address the emotional, relational, and spiritual consequences of prolonged illness.

   It is a supportive framework rather than a validated medical treatment for Lyme disease.

   Fight-or-Flight vs. Rest-and-Digest: Understanding the Nervous System

   Before introducing the 12 steps, Dr. Winfrey discusses the autonomic nervous system.

   He explains the distinction between two important branches:

   The sympathetic nervous system helps the body respond to perceived threats through fight-or-flight responses.

   The parasympathetic nervous system supports functions associated with rest, digestion, and recovery.

   Dr. Winfrey observes that many people with chronic illness spend significant time feeling threatened, overwhelmed, or constantly on guard.

   They may find themselves fighting symptoms, doctors, medications, family members, treatment plans, or the circumstances of their illness.

   He compares this experience to struggling in quicksand.

   The harder someone fights against every aspect of their circumstances, the more exhausted and overwhelmed they may become.

   His message is not that patients should stop advocating for themselves.

   Rather, he encourages them to recognize when constant conflict may be adding to their emotional and physical burden.

   Stress management and nervous system regulation can support well-being, but patients do not have to achieve a particular emotional state for medical treatment to work. Being stressed, frightened, or overwhelmed does not mean someone is preventing their own recovery.

   Dr. Chris Winfrey's 12 Steps for Chronic Illness

   The centerpiece of this interview is Dr. Winfrey's 12-step framework.

   Each step encourages patients to explore a different part of the chronic illness experience.

   Step 1: Acceptance

   Recognize that chronic illness has changed your life and that fighting reality can deepen suffering.

   Dr. Winfrey begins with acceptance.

   He explains that patients may spend years resisting the reality of their circumstances.

   They may be angry about their symptoms, frustrated by treatment failures, or grieving the life they had before becoming ill.

   These emotions are understandable.

   Acceptance does not mean approving of the illness, abandoning treatment, or giving up hope.

   It means acknowledging the present situation so that decisions can be made from a clearer understanding of reality.

   Dr. Winfrey distinguishes between survival mode and growth.

   He believes recognizing what has happened is an important foundation for moving forward.

   Step 2: Finding Meaning and Purpose

   Believe that life can still hold meaning, peace, and joy, even in the presence of illness.

   Dr. Winfrey explains that chronic illness can disrupt a person's sense of identity.

   Someone who previously defined themselves through work, parenting, caregiving, or physical activity may struggle when those roles change.

   He recalls a patient questioning the purpose of getting better because her children had grown up and she no longer had the responsibilities that once gave her life meaning.

   Dr. Winfrey believes patients benefit from identifying a reason to keep moving forward.

   Rich connects this idea to Tick Boot Camp's belief that people can discover new aspects of their identity and purpose through the recovery journey.

   The discussion emphasizes that meaning does not have to wait until symptoms disappear.

   Purpose can evolve alongside illness.

   Step 3: Surrender

   Stop battling what cannot be controlled and focus on the choices, attitudes, and actions that remain available.

   Dr. Winfrey distinguishes surrender from defeat.

   He describes surrender as acknowledging that a challenge may be too great to navigate alone.

   For patients who have already lost careers, relationships, financial stability, or physical abilities, the idea of giving up anything else can feel unbearable.

   Dr. Winfrey encourages patients to consider releasing patterns that may be increasing their suffering.

   These might include unrealistic expectations, relentless self-criticism, or the belief that they must handle everything independently.

   Surrender, in his framework, creates room to ask for help.

   It allows patients to recognize the need for medical professionals, caregivers, supportive relationships, and community.

   Surrendering to the reality of illness is not the same as surrendering the possibility of a better future.

   Step 4: Self-Reflection

   Take an honest look at how illness has affected your body, mind, emotions, and relationships.

   Dr. Winfrey encourages patients to examine the full impact of chronic illness.

   The consequences often extend beyond physical symptoms.

   Illness can change how people communicate, respond to stress, maintain relationships, and perceive themselves.

   He believes self-reflection can help patients identify both their suffering and the ways they have adapted to it.

   This process should be approached with compassion rather than blame.

   A person is not responsible for becoming ill simply because their illness has affected others.

   Step 5: Sharing the Struggle

   Speak openly with trusted people rather than carrying the entire burden of illness alone.

   Dr. Winfrey discusses the isolation that can accompany chronic illness.

   Patients may withdraw because they feel misunderstood, ashamed, exhausted, or concerned about burdening others.

   Some may struggle to explain symptoms that are invisible or difficult to describe.

   Dr. Winfrey believes sharing these experiences with trustworthy people can help reduce isolation.

   That support may come from family members, friends, counselors, support groups, or other people living with similar conditions.

   The goal is not to disclose everything to everyone.

   It is to find relationships where honesty and vulnerability can be met with understanding.

   Step 6: Willingness to Change

   Become willing to release destructive patterns, unhelpful comparisons, and unrealistic expectations.

   Chronic illness often creates pressure to compare progress with others.

   Patients may wonder why someone else recovered more quickly or responded to a treatment that did not help them.

   Dr. Winfrey encourages patients to recognize when these comparisons are causing additional distress.

   He also discusses the importance of reconsidering expectations about productivity, independence, and recovery timelines.

   Willingness means remaining open to change without demanding perfection.

   Step 7: Self-Compassion and Grace

   Acknowledge personal limitations and practice gentleness instead of judgment.

   This is one of the most emotionally powerful parts of the interview.

   Dr. Winfrey discusses the harsh internal criticism he encounters among patients.

   Some people blame themselves for becoming ill.

   Others feel guilty about the financial, emotional, or practical consequences their illness has had on their families.

   Dr. Winfrey compares this internal dialogue to a courtroom where the patient becomes their own judge, jury, and prosecutor.

   He argues that many people impose punishments on themselves that they would never consider appropriate for someone else.

   His response is to encourage self-mercy, self-compassion, and grace.

   Rich connects this to negative self-talk and the importance of treating ourselves with the same kindness we would extend to a loved one.

   Patients deserve compassion even when they cannot work, complete daily responsibilities, or make the progress they hoped for.

   Step 8: Healing Relationships

   Identify relationships affected by illness and consider opportunities for reconnection.

   Dr. Winfrey believes chronic illness can create distance between patients and the people closest to them.

   Years of pain, fatigue, emotional distress, and uncertainty can strain marriages, friendships, and family relationships.

   He encourages patients to reflect on these changes without assuming that every damaged relationship is their responsibility.

   Where appropriate, reconnecting with supportive people may help restore a sense of belonging.

   Dr. Winfrey emphasizes that relationships are important sources of emotional support and resilience.

   Step 9: Making Amends and Setting Boundaries

   When appropriate, work toward repairing strained relationships while protecting your health.

   Dr. Winfrey explains that relationship repair must be balanced with healthy boundaries.

   Reconnection is not always possible or advisable.

   Some relationships may be unsafe, dismissive, or emotionally harmful.

   His framework encourages patients to consider opportunities for reconciliation while recognizing the importance of protecting their well-being.

   The goal is not to force forgiveness or contact.

   It is to approach relationships intentionally and thoughtfully.

   Step 10: Daily Check-Ins

   Continue reflecting on your emotional and physical state while acknowledging your needs without guilt or shame.

   Dr. Winfrey encourages ongoing self-awareness.

   Patients can benefit from periodically asking themselves how they are feeling, what they need, and whether their current routines are sustainable.

   A daily check-in might include reflecting on:

   • Physical symptoms and energy levels
   • Emotional well-being
   • Stress and sleep
   • Personal boundaries
   • Support needs
   • Activities that bring comfort or meaning

   This practice can help patients communicate their needs and recognize changes over time.

   It should remain flexible rather than becoming another obligation that creates pressure.

   Step 11: Mind, Body, and Spirit Connection

   Explore practices that nourish the spirit and support resilience.

   Dr. Winfrey discusses several activities that may help patients reconnect with themselves and their sense of meaning.

   Examples include:

   • Meditation
   • Prayer
   • Spending time in nature
   • Journaling
   • Creative activities
   • Personal reflection

   For Dr. Winfrey, spirituality has been a major source of strength throughout his life.

   He encourages patients to explore practices that align with their own beliefs and values.

   Spirituality is personal, and meaningful support does not require adherence to any particular religious tradition.

   These practices may complement medical and mental health care, but they do not replace treatment for infection or other underlying conditions.

   Step 12: Service and Community

   Share your experiences and offer encouragement to others living with chronic illness.

   The final step brings the framework back to community.

   Dr. Winfrey believes people can find meaning by supporting others who are facing similar challenges.

   That support might involve listening to another patient, sharing helpful information, participating in advocacy, or offering encouragement.

   Rich connects this principle to Tick Boot Camp's mission of helping people liberate themselves and others from Lyme disease.

   Both emphasize the value of community, shared experience, and modeling hope.

   Service does not have to be physically demanding.

   For someone experiencing severe symptoms, a kind message or brief conversation may be meaningful.

   Even while living with illness, people can have value, purpose, and a positive impact on others.

   How Lyme Disease May Affect Identity and the Brain's Default Mode Network

   During the discussion of meaning and purpose, Dr. Winfrey introduces the brain's default mode network.

   This network involves several interconnected brain regions associated with self-referential thinking, autobiographical memory, and aspects of personal identity.

   Dr. Winfrey discusses his view that Lyme disease and related neuroinflammatory processes may disrupt brain network connectivity.

   He believes these disruptions could contribute to difficulties with identity, meaning, and emotional processing in some patients.

   This is an area requiring further research.

   Although neurological Lyme disease can affect the nervous system, the interview's proposed relationship between Borrelia infection and specific default mode network disruptions should not be interpreted as an established mechanism in every patient.

   For a more extensive conversation about n

10. Episode 621: Morgellons Disease, Lyme & Medical Gaslighting – Cindy Casey-Holman | LIVE from ILADS

    05.11.202623 Min.Staffel 1 · Folge 621Als Nächstes

    What if you developed painful, non-healing skin lesions, experienced sensations of something crawling beneath your skin, and then were told by a doctor that your symptoms were a psychiatric problem? In this …

    Shownotes

    What if you developed painful, non-healing skin lesions, experienced sensations of something crawling beneath your skin, and then were told by a doctor that your symptoms were a psychiatric problem?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich welcomes Cindy Casey-Holman, RN, Executive Director of the Charles E. Holman Morgellons Disease Foundation, to discuss Morgellons disease, its proposed connection to Lyme disease, emerging research, and the devastating impact of medical dismissal.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores one of the most controversial and misunderstood conditions discussed within the Lyme disease community.

    Cindy is a former critical care nurse who developed Morgellons symptoms while working in California. Despite her medical background, she describes being diagnosed with a psychiatric condition after seeking help for painful skin lesions and unusual skin sensations.

    Her husband, Charles E. Holman, became an important advocate during her illness. His support ultimately inspired the creation of a nonprofit foundation dedicated to Morgellons research, education, and patient advocacy.

    Throughout the interview, Rich and Cindy explore important questions:

    • What is Morgellons disease, and what symptoms do patients report?
    • Is there a connection between Morgellons and Lyme disease?
    • What have researchers discovered about Borrelia bacteria and skin fibers?
    • Why do some patients receive psychiatric diagnoses when seeking dermatological care?
    • What role can research and patient advocacy play in improving medical understanding?

    For patients who have experienced unexplained symptoms, social isolation, or dismissive medical encounters, this conversation offers validation, education, and a reminder that their suffering deserves compassionate attention and careful investigation.

    Meet Cindy Casey-Holman, RN

    Cindy Casey-Holman, RN, is the Executive Director of the Charles E. Holman Morgellons Disease Foundation, a Texas-based nonprofit organization supporting scientific research, education, and advocacy related to Morgellons disease.

    Before becoming a patient advocate, Cindy worked as a registered nurse in critical care, including high-acuity intensive care settings.

    Her experience with Morgellons changed her life.

    After developing persistent skin symptoms, Cindy struggled to obtain answers from medical professionals.

    She describes the experience as particularly painful because she had spent her career caring for critically ill patients and working alongside physicians.

    Her husband, Charles, became one of her strongest advocates.

    When Cindy was too ill to advocate effectively for herself, he helped her navigate the medical system and seek answers.

    The foundation was named in his honor.

    Today, Cindy works with researchers, healthcare professionals, and patients to improve awareness and understanding of Morgellons disease.

    Learn more about Cindy Casey-Holman and the foundation's leadership.

    What Is Morgellons Disease?

    Morgellons disease is a term used to describe a collection of skin-related symptoms, often involving reports of unusual fibers or filaments associated with skin lesions.

    Patients may experience persistent itching, pain, abnormal skin sensations, and wounds that are slow to heal.

    Cindy describes Morgellons as a dermopathy, meaning a condition affecting the skin.

    During the interview, she explains that some patients develop lesions on their arms, legs, face, scalp, back, or other parts of the body.

    She also describes the presence of colored fibers associated with affected skin.

    The cause of Morgellons remains scientifically contested.

    Some researchers have proposed an infectious association, including a possible connection with Borrelia bacteria. Other investigations have not demonstrated an infectious cause and have examined dermatological, neurological, and psychiatric explanations.

    Regardless of the underlying cause, the pain, itching, wounds, and distress reported by patients deserve appropriate medical evaluation.

    Common Morgellons Symptoms

    Cindy describes several symptoms that patients report.

    Painful, Slow-Healing Skin Lesions

    One of the most prominent complaints involves skin wounds that may persist for extended periods.

    Cindy explains that some lesions can become disfiguring, particularly when they appear on visible areas such as the face.

    Severe Itching and Burning

    Patients may experience intense itching, irritation, and pain.

    These symptoms can interfere with sleep, concentration, and daily activities.

    Crawling Sensations Beneath the Skin

    Cindy describes sensations that patients compare to something crawling on or beneath their skin.

    This type of abnormal sensation is sometimes called formication.

    Formication can occur in several medical and neurological conditions and does not, by itself, establish the presence of parasites or infection.

    Fibers or Filaments Associated With Skin Lesions

    Cindy discusses patients reporting unusual colored fibers within or emerging from affected skin.

    The origin and significance of these materials remain disputed in the medical literature.

    Emotional and Social Isolation

    Visible skin lesions can create significant embarrassment and anxiety.

    Cindy explains that some patients avoid social situations because they are concerned about how others will react to their appearance.

    The combination of physical symptoms, uncertainty, and stigma can profoundly affect quality of life.

    Is Morgellons Disease Connected to Lyme Disease?

    One of the interview's central questions concerns the relationship between Morgellons and Lyme disease.

    Cindy believes Morgellons may represent a skin manifestation associated with Borrelia infection.

    She explains that she was not initially aware of having Lyme disease when her Morgellons symptoms developed.

    She also discusses research reporting Borrelia organisms or genetic material in some skin samples from people identified as having Morgellons.

    Other microorganisms discussed include:

    • Bartonella henselae
    • Helicobacter pylori
    • Treponema denticola

    Cindy believes Borrelia may play a particularly important role.

    However, the presence of microbial material in selected research samples does not establish that these organisms cause Morgellons or explain every patient's symptoms.

    The proposed connection remains controversial, and larger, independently replicated studies are needed.

    For more information about research exploring Morgellons, visit the foundation's research resources.

    Could Morgellons Be a Manifestation of Lyme Disease?

    Rich raises an important question about medical terminology.

    If Morgellons symptoms are associated with Lyme disease in some patients, should Morgellons be classified as a separate condition or considered a manifestation of another illness?

    Cindy explains that some advocates and researchers have discussed whether Morgellons might be more appropriately described as a syndrome.

    Rich argues that separating Morgellons from Lyme disease could create additional confusion when patients seek medical care.

    He worries that clinicians may overlook possible tick-borne infections if they view skin symptoms as unrelated.

    Cindy agrees that understanding potential connections is important.

    However, Morgellons has not been established as a diagnostic sign of Lyme disease, and not everyone reporting Morgellons symptoms has confirmed Lyme disease.

    Determining the appropriate classification requires additional research.

    What Are the Fibers Associated With Morgellons?

    One of the most unusual features discussed in the interview is the presence of colored fibers or filaments.

    Cindy describes how difficult it can be for patients to explain these observations to healthcare professionals.

    She believes the fibers are an important part of the condition and should be investigated.

    Some published studies have proposed that fibers associated with Morgellons involve biological materials produced within the skin.

    Other investigations have identified textile fibers and other environmental materials.

    The CDC's investigation of unexplained dermopathy did not identify a common infectious cause among the patients studied.

    The disagreement illustrates why carefully designed research, appropriate sampling methods, and independent replication are important.

    Morgellons, Medical Gaslighting, and Psychiatric Diagnoses

    One of the most emotional portions of the interview concerns Cindy's experiences seeking medical care.

    She recalls visiting a dermatologist while experiencing severe skin symptoms.

    Despite her professional background as an intensive care nurse, she says she was diagnosed with delusional parasitosis.

    Cindy describes feeling devastated.

    She had spent years caring for patients, trusting medical professionals, and working within the healthcare system.

    Suddenly, she found herself questioning whether her own concerns would be taken seriously.

    She also recalls reviewing medical records that suggested her husband shared her alleged delusion.

    For Cindy, these experiences were deeply damaging.

    She believes they contributed to the isolation and frustration experienced by many Morgellons patients.

    The interview highlights why clinicians should approach unexplained symptoms with compassion, conduct appropriate evaluations, and communicate diagnoses respectfully.

    Psychiatric and neurological conditions are legitimate medical conditions that also deserve evidence-based treatment. A psychiatric diagnosis should never be used as an excuse to dismiss physical suffering or avoid evaluating other possible causes.

    When Medical Professionals Become Patients

    Rich explores why Cindy's experience may have been especially traumatic because she was a nurse.

    As a critical care professional, Cindy was accustomed to working with physicians and caring for patients experiencing life-threatening conditions.

    She understood the medical system from the inside.

    Yet when she became ill, she struggled to obtain the kind of support she had expected.

    Rich observes that losing confidence in the healthcare system can be painful for anyone.

    For someone who has devoted a career to healthcare, that loss of trust may be particularly difficult.

    Cindy agrees.

    Her story illustrates how becoming a patient can dramatically change a healthcare professional's perspective.

    How Cindy's Husband Inspired the Charles E. Holman Foundation

    Cindy explains that her husband played a central role in helping her through the most difficult periods of illness.

    When she struggled to advocate for herself, he stepped forward.

    He helped her pursue answers and supported her efforts to understand the condition.

    The foundation was eventually named in his honor.

    The Charles E. Holman Morgellons Disease Foundation was established to advance scientific understanding and support people experiencing Morgellons symptoms.

    Its work focuses on:

    • Funding scientific research
    • Educating healthcare professionals
    • Raising public awareness
    • Supporting patients and caregivers
    • Encouraging additional research into possible causes
    • Advocating for greater attention to Morgellons-related concerns

    Cindy explains that scientific research became especially important because patients needed credible information to bring to medical appointments.

    She believes published studies can help patients communicate their concerns and encourage further investigation.

    Why Morgellons Research Matters

    Cindy discusses how the foundation has supported research into Morgellons disease.

    At the time of the interview, she estimated that approximately 20 or more relevant scientific papers had been published.

    She describes the importance of peer-reviewed research in a field where patients frequently encounter skepticism.

    For Cindy, research serves two purposes.

    First, it may help clarify the biological mechanisms responsible for reported symptoms.

    Second, it provides patients and clinicians with information that can support more informed conversations.

    The foundation continues to encourage research and collaboration.

    Explore the Charles E. Holman Foundation's research initiatives.

    What Does Current Research Say About Morgellons?

    Morgellons remains a subject of scientific disagreement.

    Research supporting an infectious hypothesis has reported associations with Borrelia and other microorganisms in selected patients.

    Other studies, including the CDC's investigation, have not established an infectious cause.

    A 2024 review of Morgellons disease describes the conflicting literature and the challenges involved in understanding the condition.

    These disagreements make further research important.

    At present, there is no universally accepted infectious explanation, validated Morgellons-specific diagnostic test, or established antibiotic regimen for the condition.

    Patients experiencing persistent skin lesions, abnormal sensations, or other unexplained symptoms should receive appropriate medical evaluation to identify treatable causes and manage their symptoms.

    Cindy's Experience With Long-Term Antibiotic Treatment

    Cindy also discusses her personal treatment history.

    She explains that she has used oral antibiotics for many years and reports that her skin symptoms worsen when she discontinues them.

    She describes combinations of medications sometimes used by clinicians treating patients with suspected tick-borne infections.

    The conversation includes references to rifampin, trimethoprim-sulfamethoxazole, and other antibiotics.

    Cindy also discusses using probiotics while taking antibiotics.

    These statements describe her individual experience and the practices she has encountered.

    They do not establish that long-term antibiotics are safe or effective for Morgellons disease.

    Prolonged antibiotic treatment can carry significant risks, including medication interactions, liver injury, antibiotic-associated infections, and antimicrobial resistance.

    Patients should not begin, combine, or discontinue antibiotics based on this interview.

    Could Tick Saliva Help Explain Morgellons Symptoms?

    Rich introduces a hypothesis about the relationship between tick bites and skin symptoms.

    He discusses how ticks release saliva into the skin while feeding.

    Tick saliva contains biologically active substances that help ticks feed and interact with the host's immune response.

    Rich wonders whether Borrelia introduced during a tick bite could contribute to skin changes that later appear as Morgellons symptoms.

    Cindy finds the question interesting but acknowledges that the proposed mechanism has not been studied sufficiently.

    This is an exploratory discussion, not an established explanation.

    Tick-borne infection risk depends on factors including tick species, pathogen, and attachment duration.

    A proposed mechanism involving tick saliva does not establish that Morgellons is transmitted by ticks or caused by Borrelia.

    Why Morgellons Patients Need Compassion and Community

    Beyond the medical questions, Cindy emphasizes the emotional burden of living with a poorly understood condition.

    Patients may experience severe symptoms while also struggling with disbelief from family members, friends, or healthcare professionals.

    Some withdraw from social activities because of visible lesions.

    Others become discouraged after repeated unsuccessful medical appointments.

    Cindy believes patient advocacy organizations can help reduce that isolation.

    The foundation works to connect patients with information, research, and community resources.

    Her message reinforces an important Tick Boot Camp principle: People experiencing difficult-to-explain symptoms deserve respect, support, and the opportunity to pursue appropriate medical care.

    How to Support Morgellons Research and Advocacy

    Cindy encourages listeners to learn more about the Charles E. Holman Morgellons Disease Foundation.

    The organization supports scientific research and patient education while advocating for greater awareness.

    People interested in learning more can explore:

    • Charles E. Holman Morgellons Disease Foundation
    • Foundation leadership and mission
    • Morgellons research initiatives

    Patients and caregivers can also explore the foundation's educational resources and community initiatives.

    Key Takeaways

    • Morgellons involves distressing skin-related symptoms. Patients report painful lesions, itching, abnormal skin sensations, and fibers associated with affected skin.
    • Cindy Casey-Holman is a registered nurse and patient advocate. Her personal experiences led her to become Executive Director of the Charles E. Holman Foundation.
    • Her husband played a central role in her advocacy journey. The foundation was named in his honor.
    • A possible connection between Morgellons and Borrelia has been investigated. Some researchers report associations, but causation has not been established.
    • The cause of Morgellons remains contested. Published studies have reached different conclusions.
    • Medical dismissal can be profoundly damaging. Cindy describes the emotional impact of receiving psychiatric diagnoses while seeking help for physical symptoms.
    • Patients deserve compassionate medical evaluation. Unexplained symptoms should be investigated rather than automatically dismissed.
    • Scientific research is essential. The foundation supports studies intended to clarify the condition.
    • Long-term antibiotics are not an established Morgellons treatment. Cindy's experience should not be interpreted as a general treatment recommendation.
    • Patient advocacy can create meaningful change. Research funding, education, and community support can help address gaps in understanding.
    • No one should have to navigate unexplained illness alone. Compassion and community remain essential even when medical questions are unresolved.

    About This LIVE from ILADS Interview

    Recorded at the 2025 International Lyme and Associate

11. Episode 620: How to Find the Right Lyme Disease Doctor: Integrative Medicine & Patient Advocacy – Dr. Marina Rasnow-Hill | LIVE from ILADS

    04.11.202620 Min.Staffel 1 · Folge 620Als Nächstes

    What happens when you're living with chronic Lyme disease, your symptoms are real, but your doctor doesn't have all the answers? And what can patients and physicians do to build a better relationship that leads …

    Shownotes

    What happens when you're living with chronic Lyme disease, your symptoms are real, but your doctor doesn't have all the answers? And what can patients and physicians do to build a better relationship that leads to better care?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich welcomes Dr. Marina Rasnow-Hill, MD, a board-certified family and integrative medicine physician, to explore the challenges of treating complex chronic illness, the limitations of traditional medical training, and the importance of building a healthy doctor-patient relationship.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why patients with Lyme disease, chronic fatigue, long COVID, mold-related health concerns, and other complex conditions may struggle to find answers.

    Dr. Rasnow-Hill shares how her own health challenges led her beyond conventional medical training to explore integrative medicine, acupuncture, herbal therapies, and individualized approaches to chronic illness.

    Rich and Dr. Rasnow-Hill also examine a topic that rarely receives enough attention: the responsibilities, expectations, vulnerabilities, and communication challenges on both sides of the doctor-patient relationship.

    The conversation concludes with practical advice for patients who want to prepare for appointments, advocate for themselves, and find healthcare professionals who will work collaboratively with them.

    Meet Dr. Marina Rasnow-Hill, MD

    Dr. Marina Rasnow-Hill, MD, is a California-based physician with approximately 20 years of experience in medicine.

    She began her career in family medicine before transitioning toward integrative medicine.

    Her professional background includes board certifications in family medicine, integrative medicine, lifestyle medicine, obesity medicine, and medical acupuncture.

    Dr. Rasnow-Hill also completed training through the Institute for Functional Medicine.

    During the interview, she explains that she has focused exclusively on integrative medicine for approximately seven years.

    She currently offers telehealth consultations in six western states: California, Washington, Nevada, Arizona, Colorado, and Idaho.

    Her clinical interests include chronic fatigue, chronic pain, immune health, gastrointestinal health, and complex chronic illness.

    Learn more through her Institute for Functional Medicine practitioner profile.

    Why an Integrative Medicine Physician Attended ILADS

    Dr. Rasnow-Hill explains that although she has been involved with ILADS for years, the 2025 conference was her first opportunity to attend in person.

    She traveled from California to San Antonio to learn from clinicians and researchers working with Lyme and other tick-borne diseases.

    She describes herself as a lifelong learner who continually looks for ways to improve patient care.

    Dr. Rasnow-Hill explains that she already works with patients experiencing Lyme disease and other complex illnesses, but wants to continue expanding her knowledge.

    Her motivation is practical: she attends medical conferences with specific patients in mind, looking for information that may help guide their future care.

    Treating Complex Chronic Illness One Layer at a Time

    One of Dr. Rasnow-Hill's biggest takeaways from ILADS involves recognizing that complex chronic illness may require evaluating multiple contributing conditions.

    She discusses patients with overlapping concerns involving:

    • Lyme disease and other tick-borne infections
    • Chronic fatigue
    • Long COVID
    • Mold-related health concerns
    • Immune dysfunction
    • Other medical conditions that may complicate recovery

    Rather than assuming that one diagnosis explains every symptom, she emphasizes the importance of reassessing the patient's condition as new information becomes available.

    Dr. Rasnow-Hill also discusses conference presentations involving antifungal medications, antiviral therapies, and herbal approaches.

    These interventions require appropriate medical indications, and their effectiveness varies by condition.

    Her broader message is that clinicians should remain curious and willing to reconsider their approach when a patient's progress is limited.

    From Conventional Medicine to Integrative Medicine

    Rich asks Dr. Rasnow-Hill why she chose to pursue integrative medicine after completing conventional medical training.

    She explains that her interest began early in her career.

    Even while practicing traditional medicine, she incorporated acupuncture into patient care.

    She recalls carrying acupuncture needles in her coat pocket so she could offer treatment when appropriate.

    Her interest in complementary approaches was also influenced by her upbringing.

    Dr. Rasnow-Hill grew up in a family that was open to what would now be called integrative or complementary medicine.

    However, her own health challenges played an especially important role.

    She describes experiencing medical problems that were not being adequately addressed through the approaches available to her.

    Those experiences encouraged her to explore additional training.

    She also began recognizing similar frustrations among her patients.

    What Is Integrative Medicine?

    Integrative medicine combines conventional medical care with selected complementary approaches when appropriate.

    Depending on the condition and available evidence, these may include:

    • Nutrition and lifestyle interventions
    • Acupuncture
    • Stress management
    • Physical activity and rehabilitation
    • Selected herbal or botanical therapies
    • Other supportive interventions

    Dr. Rasnow-Hill believes this broader perspective can be valuable when caring for patients with complex medical histories.

    She explains that conventional medical education often emphasizes structured diagnostic and treatment frameworks.

    While these frameworks are essential, she believes clinicians also need to understand the individual circumstances of the person receiving care.

    Importantly, integrative medicine should not mean replacing proven treatments with unvalidated alternatives.

    The goal is to consider evidence, patient preferences, safety, and the full clinical picture.

    Why Medical School May Not Prepare Doctors for Every Chronic Illness

    Rich and Dr. Rasnow-Hill discuss the challenges physicians face when treating conditions that do not fit neatly into established diagnostic categories.

    Dr. Rasnow-Hill explains that medical school provides extensive scientific and clinical training.

    However, she believes some important aspects of caring for people with complex chronic illness receive less attention.

    These include:

    • Navigating diagnostic uncertainty
    • Managing complicated symptom patterns
    • Building long-term therapeutic relationships
    • Addressing emotional and social concerns
    • Understanding patient experiences
    • Recognizing the limits of existing medical knowledge

    She explains that postgraduate education allowed her to explore subjects that were not central to her original medical training.

    Her experience reinforces the importance of continuing medical education and professional curiosity.

    What Happens When Doctors Don't Have All the Answers?

    One of the most compelling parts of the interview focuses on the emotional challenges physicians face when they cannot explain or resolve a patient's symptoms.

    Rich observes that many physicians have spent much of their lives succeeding academically and solving difficult problems.

    Patients often expect them to provide clear diagnoses and effective solutions.

    But complex chronic illness does not always offer straightforward answers.

    Dr. Rasnow-Hill acknowledges that uncertainty can be difficult for clinicians.

    She believes an important quality of a good physician is the ability to admit when they do not know something.

    Rather than pretending to have every answer, she values doctors who remain curious, seek additional information, and collaborate with patients.

    Medical humility is not a weakness. It can be one of the foundations of effective care.

    Why Patients Need Confidence and Honesty From Their Doctors

    Rich raises an interesting dilemma.

    Patients want doctors who are confident and capable.

    When someone has been sick for years, hearing a physician express confidence can provide tremendous reassurance.

    However, excessive certainty can become problematic when the underlying diagnosis or treatment plan remains unclear.

    Dr. Rasnow-Hill agrees that clinicians must balance confidence with honesty.

    A physician can communicate competence while acknowledging uncertainty.

    The goal is not to promise a cure or guarantee an outcome.

    It is to establish trust through clear communication, realistic expectations, and a willingness to work together.

    Understanding Medical Gaslighting and Patient Frustration

    Rich and Dr. Rasnow-Hill discuss the frustration many patients experience when their symptoms are dismissed or misunderstood.

    People living with chronic Lyme disease and other complex conditions may have spent years searching for explanations.

    Some have experienced medical encounters that left them feeling unheard, invalidated, or discouraged.

    Dr. Rasnow-Hill recognizes how vulnerable patients can feel when seeking help.

    She also explains that healthcare professionals may experience uncertainty and frustration when they cannot determine what is causing a patient's symptoms.

    Understanding both perspectives can support more productive communication.

    However, empathy for clinicians does not mean patients must accept dismissive behavior or inadequate care.

    Patients deserve to have their symptoms taken seriously, their concerns evaluated, and their questions answered respectfully.

    Why the Doctor-Patient Relationship Is a Partnership

    A central theme of the interview is that effective healthcare requires collaboration.

    Rich compares the doctor-patient relationship to other important relationships in life.

    Both parties have responsibilities.

    Physicians must listen carefully, communicate clearly, and provide appropriate medical care.

    Patients can contribute by sharing relevant symptoms, describing treatment responses, asking questions, and communicating their goals.

    Dr. Rasnow-Hill agrees that a collaborative relationship can improve the care experience.

    She emphasizes that patients should feel empowered to participate in decisions rather than viewing themselves as passive recipients of treatment.

    Why Communication Matters in Chronic Lyme Disease Care

    Patients with complex illnesses often have extensive medical histories.

    They may have seen multiple specialists, undergone numerous tests, and tried different treatments.

    Communicating this information can be difficult, especially when appointments are short.

    Dr. Rasnow-Hill explains that clinicians also face challenges when reviewing complicated medical histories.

    She encourages patients to recognize that building a complete understanding of their health may take time.

    At the same time, clinicians should make reasonable efforts to understand patients' experiences and explain their recommendations.

    Clear communication can help both parties identify priorities and make informed decisions.

    Three Ways to Build a Better Relationship With Your Lyme Disease Doctor

    Toward the end of the interview, Rich asks Dr. Rasnow-Hill what patients can do before an appointment to help create a healthier therapeutic relationship.

    Her advice centers on three important principles.

    1. Understand That Complex Chronic Illness Care Is a Process

    Dr. Rasnow-Hill encourages patients to approach a new medical relationship with realistic expectations.

    A physician meeting someone for the first time may need time to understand years of symptoms, testing, and previous treatment.

    She believes patients can benefit from viewing healthcare as an ongoing collaborative process rather than expecting every question to be answered during a single appointment.

    This does not mean accepting unnecessary delays or dismissive care.

    It means recognizing that complex medical evaluation often requires multiple steps.

    2. Organize Your Medical History and Participate in Your Care

    Dr. Rasnow-Hill encourages patients to think of themselves as the central member of their healthcare team.

    When several physicians or specialists are involved, communication between offices may be incomplete.

    Keeping track of important medical information can help.

    Useful preparation may include:

    • Maintaining a current medication and supplement list
    • Organizing relevant laboratory results
    • Keeping a timeline of major symptoms
    • Documenting previous diagnoses and treatments
    • Identifying the most important questions for the appointment
    • Sharing changes in symptoms or treatment tolerance

    Dr. Rasnow-Hill recognizes that this can be a significant burden, especially for people experiencing fatigue, cognitive difficulties, or disability.

    Patients may benefit from assistance from caregivers, patient advocates, or care coordinators when available.

    3. Don't Give Up If a Doctor Isn't the Right Fit

    Dr. Rasnow-Hill emphasizes that patients should not feel trapped in an ineffective therapeutic relationship.

    Sometimes communication styles do not align.

    Sometimes a physician lacks the expertise needed for a particular condition.

    And sometimes a patient simply does not feel heard.

    She encourages patients to continue seeking appropriate care rather than allowing one disappointing experience to discourage them.

    A second opinion or referral to another qualified specialist may provide additional perspective.

    The patient is the center of the healthcare team. Finding a clinician who respects that relationship matters.

    Why Patients and Doctors Both Need Empathy

    One of the interview's most meaningful messages is that compassion should extend in both directions.

    Patients may be frightened, exhausted, financially strained, or overwhelmed by their symptoms.

    Doctors may face demanding schedules, uncertainty, administrative pressures, and the emotional weight of caring for people they cannot always help as quickly as they would like.

    Dr. Rasnow-Hill believes recognizing these realities can create space for more honest conversations.

    She encourages patients to communicate openly while allowing relationships to develop over time.

    She also emphasizes the importance of finding clinicians who demonstrate humility, curiosity, and respect.

    Mutual empathy can strengthen a therapeutic relationship without minimizing the patient's needs or the physician's professional responsibilities.

    The Importance of Continuing Medical Education

    Dr. Rasnow-Hill's enthusiasm for attending ILADS reflects another central theme: medicine continues to evolve.

    No physician can know everything.

    Research advances, clinical evidence changes, and new questions emerge.

    Dr. Rasnow-Hill believes physicians should remain open to learning throughout their careers.

    She values opportunities to exchange ideas with colleagues and consider new research.

    For patients, this reinforces the importance of working with healthcare professionals who are willing to reassess their conclusions when new evidence becomes available.

    Explore more conversations with physicians through Tick Boot Camp's doctor interview collection.

    How to Work With Dr. Marina Rasnow-Hill

    Dr. Rasnow-Hill offers integrative medicine consultations through telehealth.

    Her professional profile lists availability in:

    • California
    • Washington
    • Nevada
    • Arizona
    • Colorado
    • Idaho

    Her areas of interest include chronic fatigue, chronic pain, immune health, gastrointestinal concerns, and complex chronic illness.

    For current availability, services, and appointment information, visit Dr. Marina Rasnow-Hill's Institute for Functional Medicine profile.

    Key Takeaways

    • Dr. Marina Rasnow-Hill combines conventional and integrative medicine. Her background includes family medicine, medical acupuncture, and additional integrative training.
    • Her own health challenges influenced her medical career. Personal experience encouraged her to explore additional approaches to complex illness.
    • Lyme disease care can involve overlapping medical conditions. Careful assessment is essential when symptoms have multiple potential causes.
    • Medical education cannot provide every answer. Physicians need continuing education, curiosity, and clinical humility.
    • Patients deserve validation. Unexplained symptoms should not be dismissed simply because a diagnosis is difficult.
    • Doctors can be confident without pretending to know everything. Honest communication supports trust.
    • The doctor-patient relationship is a partnership. Collaboration and mutual respect can improve the healthcare experience.
    • Preparing for appointments can help. Organized records, symptom histories, and questions support communication.
    • Complex care often takes time. Building a therapeutic relationship may require more than one visit.
    • Patients should remain active participants in their care. Understanding treatment options and communicating concerns are important.
    • A poor medical encounter should not end the search for help. Seeking another qualified clinician or a second opinion may be appropriate.
    • Empathy matters on both sides. Patients and physicians benefit from respectful, honest conversations.

    About This LIVE from ILADS Interview

    Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Marina Rasnow-Hill, MD, a California-based physician specializing in integrative medicine.

    Rich and Dr. Rasnow-Hill explore the challenges of treating Lyme disease and complex chronic illness, the limitations of medical training, the role of integrative approaches, and the importance of building collaborative doctor-patient relationships.

    The discussion offers practical guidance for patients who want to improve communication with their physicians, organize their medical information, and advocate for appropriate care.

    Explore more interviews from the conference through Tick Boot Camp's LIVE from ILADS podcast series.

12. Episode 619: Sequential Antibiotic Therapy for Chronic Lyme Disease – Dr. Louis Teulières | LIVE from ILADS

    03.11.202616 Min.Staffel 1 · Folge 619Als Nächstes

    Could changing how antibiotics are administered help address some of the biggest challenges in treating chronic and disseminated Lyme disease? What if the timing, combination, and delivery of antibiotics matter …

    Shownotes

    Could changing how antibiotics are administered help address some of the biggest challenges in treating chronic and disseminated Lyme disease? What if the timing, combination, and delivery of antibiotics matter as much as the medications themselves?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reunites with Dr. Louis C. Teulières, MD, PhD, a French physician and Lyme disease researcher, to explore his approach to sequential antibiotic therapy, Borrelia persistence, biofilms, neurological Lyme disease, antibiotic combinations, and treatment-related inflammation.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation follows Dr. Teulières' presentation, Antibiotic Rotational Combination Sequential Therapies in Chronic and Disseminated Disease TBD.

    Dr. Teulières challenges conventional approaches to prolonged antibiotic treatment and explains why he believes carefully structured treatment sequences may offer advantages for selected patients with complex tick-borne illnesses.

    Rather than administering antibiotics continuously for extended periods, he describes a strategy involving shorter treatment windows, planned breaks, and carefully selected antibiotic combinations.

    He also discusses the importance of matching antibiotics to the tissues affected by infection, considering the blood-brain barrier in neurological Lyme disease, and addressing potential complications involving the gut microbiome, liver, and kidneys.

    Rich and Dr. Teulières explore three major questions:

    • Can sequential antibiotic treatment help clinicians better evaluate treatment responses?
    • Could planned treatment breaks reduce some of the burdens associated with prolonged antibiotic exposure?
    • How might clinicians select antibiotic combinations based on bacterial behavior, tissue penetration, and patient symptoms?

    The central message is that Lyme disease treatment requires thoughtful clinical decision-making, individualized care, and an understanding of both the potential benefits and risks of antimicrobial therapy.

    The sequential antibiotic approach discussed in this interview represents Dr. Teulières' clinical perspective. Its effectiveness and safety compared with established Lyme disease treatment regimens have not been demonstrated in high-quality comparative clinical trials.

    Meet Dr. Louis C. Teulières, MD, PhD

    Dr. Louis C. Teulières, MD, PhD, is a French physician and researcher whose work includes infectious diseases, complex chronic illness, and approaches to treating Lyme and other tick-borne diseases.

    At the 2025 ILADS Conference, Dr. Teulières presented Antibiotic Rotational Combination Sequential Therapies in Chronic and Disseminated Disease TBD.

    His presentation explores the use of antibiotic combinations and sequential treatment strategies in patients with complex tick-borne illnesses.

    In this interview, he explains his clinical reasoning and discusses why he believes antibiotic timing, medication selection, and treatment intervals deserve greater attention.

    Dr. Teulières has been a returning guest on Tick Boot Camp, sharing his perspectives on Lyme disease treatment and the challenges of managing complex infections.

    What Is Sequential Antibiotic Therapy for Lyme Disease?

    One of the main topics of the interview is Dr. Teulières' proposed sequential antibiotic treatment strategy.

    He distinguishes this approach from three other methods of administering antibiotics:

    Continuous treatment: Antibiotics are administered without planned breaks for a prescribed period.

    Pulsed treatment: Antibiotics are administered intermittently according to a predetermined schedule.

    Rotational treatment: Different antibiotics are used in rotation.

    Sequential treatment: Dr. Teulières describes administering selected antibiotic combinations for a defined period, followed by a treatment break, with subsequent treatment decisions informed by the patient's response.

    During the interview, he discusses an example involving approximately 14 days of antibiotic therapy followed by a planned break of approximately 14 days.

    He explains that these intervals may allow clinicians to assess symptoms, review treatment tolerance, and adjust medication combinations.

    Dr. Teulières believes the strategy may also provide opportunities for supportive care between antibiotic courses.

    However, this specific schedule has not been established as an effective or safer treatment protocol for persistent Lyme disease through controlled clinical trials.

    Patients should never independently interrupt or modify prescribed antibiotic treatment.

    Why Dr. Teulières Questions Long-Term Continuous Antibiotics

    Dr. Teulières explains that he has concerns about prolonged, uninterrupted antibiotic exposure.

    He identifies several potential challenges:

    • Antibiotic-associated adverse effects
    • Disruption of the intestinal microbiome
    • Selection of antibiotic-resistant organisms
    • Difficulty identifying which medications are producing benefits
    • Possible bacterial survival mechanisms
    • Additional physical stress during treatment

    He believes these concerns warrant consideration of alternative dosing strategies.

    His proposed sequential approach is intended to create opportunities for reassessment rather than maintaining the same treatment continuously.

    The discussion highlights an important distinction between the established effectiveness of antibiotics for Lyme disease and ongoing debates about additional antimicrobial treatment for persistent symptoms after standard therapy.

    Borrelia Persistence: Round Bodies, Biofilms, and Tissue Survival

    Rich asks Dr. Teulières about the ability of Borrelia bacteria to survive under challenging conditions.

    Dr. Teulières describes several mechanisms that he believes may contribute to bacterial persistence.

    Round-Body Forms

    He explains that Borrelia can change its morphology under certain environmental conditions.

    These changes, sometimes described as round-body forms, have been observed in laboratory research.

    Dr. Teulières believes such changes may influence bacterial susceptibility to antimicrobial treatment.

    Biofilms

    Dr. Teulières also discusses biofilms, which are structured communities of microorganisms surrounded by protective material.

    Biofilms can influence how certain microorganisms respond to environmental conditions and antimicrobial exposure.

    He raises the possibility that biofilm-related mechanisms could complicate treatment in some patients.

    Tissue Localization

    The interview explores whether bacteria occupying certain tissues may be less accessible to particular medications.

    Dr. Teulières emphasizes that antibiotic selection should account for where an infection is located.

    Although Borrelia morphology, biofilm formation, and persister states are active research topics, their role in persistent human Lyme disease symptoms remains incompletely understood.

    Laboratory findings do not establish that these mechanisms explain every case of persistent symptoms or that sequential antibiotic treatment overcomes them in patients.

    Antibiotic Resistance vs. Bacterial Persistence

    Dr. Teulières discusses the possibility that prolonged antibiotic exposure may contribute to the selection of resistant organisms.

    He also describes bacterial forms that may survive exposure through mechanisms distinct from conventional antibiotic resistance.

    These concepts are related but not identical.

    Antibiotic resistance involves mechanisms that allow bacteria to withstand antimicrobial activity.

    Antibiotic tolerance or persistence can involve survival during treatment without conventional inherited resistance.

    Dr. Teulières believes understanding these differences may help clinicians develop more targeted approaches.

    The clinical significance of proposed Borrelia persister forms remains an area of investigation, and the interview does not establish that sequential therapy prevents antibiotic resistance.

    Why Dr. Teulières Recommends Treatment Breaks

    A central feature of Dr. Teulières' proposed strategy is incorporating planned intervals between antibiotic courses.

    He identifies three potential advantages.

    1. Allowing Time for Recovery

    Dr. Teulières believes treatment breaks may allow patients to recover from some medication-related burdens.

    He discusses the liver and kidneys, which play essential roles in processing and eliminating many medications and their metabolites.

    He also describes the potential importance of reducing treatment-related discomfort.

    2. Evaluating Treatment Response

    Dr. Teulières believes a defined treatment period followed by observation may help clinicians determine whether a particular antibiotic combination is producing meaningful changes.

    He suggests monitoring whether symptoms improve, remain unchanged, or return during a treatment break.

    3. Adjusting Antibiotic Combinations

    Sequential treatment may also provide opportunities to reassess the medications being used.

    Dr. Teulières proposes adjusting combinations based on the patient's symptoms, suspected infections, and clinical response.

    These are the potential advantages he describes, not benefits established through comparative clinical trials.

    Scheduled antibiotic breaks have not been proven to provide a specific detoxification benefit or prevent organ injury.

    What Happens When Antibiotics Kill Bacteria?

    Rich asks Dr. Teulières why some patients experience increased symptoms during antimicrobial treatment.

    Dr. Teulières describes how bacterial components can stimulate inflammatory responses as organisms are affected by treatment.

    He discusses microbial debris and inflammatory molecules that may contribute to discomfort.

    The conversation connects this process to concerns about treatment-related inflammation.

    However, symptom worsening during Lyme disease treatment is not automatically evidence of bacterial die-off.

    Medication reactions, allergic responses, unrelated illnesses, and other complications can produce similar symptoms.

    A true Jarisch-Herxheimer reaction is a recognized acute inflammatory response associated with treatment of certain infections, including some spirochetal diseases.

    Severe or persistent symptoms during treatment require medical evaluation rather than an assumption that the medication is working.

    Bacteriostatic vs. Bactericidal Antibiotics

    Dr. Teulières explains why he considers the mechanisms of different antibiotics when selecting treatment combinations.

    Bacteriostatic Antibiotics

    Bacteriostatic antibiotics primarily inhibit bacterial growth under particular conditions.

    Some interfere with bacterial protein synthesis.

    Dr. Teulières discusses azithromycin as an example.

    Bactericidal Antibiotics

    Bactericidal antibiotics kill susceptible bacteria under particular conditions.

    Different medications accomplish this through different mechanisms, including disruption of bacterial cell wall synthesis.

    Dr. Teulières discusses ceftriaxone as an example.

    Why Combine Both Types?

    Dr. Teulières proposes combining selected bacteriostatic and bactericidal medications.

    He believes that targeting bacteria through different mechanisms may improve treatment effectiveness in certain circumstances.

    He discusses combinations such as azithromycin and ceftriaxone to illustrate his approach.

    However, combining these antibiotic categories does not automatically improve clinical outcomes.

    Some combinations may introduce additional adverse effects or drug interactions, and certain combinations can interfere with one another.

    Antibiotic selection must be based on the specific infection, patient characteristics, and available evidence.

    Selecting Antibiotics Based on Tissue Penetration

    Another important concept in the interview is the distribution of antibiotics throughout the body.

    Dr. Teulières emphasizes that different medications reach different tissues at different concentrations.

    He discusses selecting antibiotics according to the location of suspected infection.

    Relevant considerations may include:

    • Skin and connective tissue involvement
    • Joint manifestations
    • Neurological symptoms
    • Central nervous system infection
    • The presence of other diagnosed infections
    • Medication absorption and distribution
    • Patient-specific contraindications

    Dr. Teulières believes these factors are especially important in patients with complex or disseminated disease.

    The broader medical principle is that treatment selection should account for both the organism being treated and the anatomical site of infection.

    Neurological Lyme Disease and the Blood-Brain Barrier

    Rich and Dr. Teulières discuss how treatment decisions may differ when Lyme disease affects the nervous system.

    Dr. Teulières emphasizes the importance of selecting antibiotics capable of reaching the relevant site of infection.

    He identifies several antibiotic families and discusses their potential tissue penetration.

    The blood-brain barrier helps regulate which substances enter the central nervous system.

    Certain medications penetrate this barrier more effectively than others, depending on factors such as drug properties and inflammation.

    However, neurological symptoms alone do not establish central nervous system infection.

    Similarly, the ability of a medication to penetrate the blood-brain barrier does not automatically make it effective or appropriate for Lyme neuroborreliosis.

    Treatment depends on the specific neurological manifestation and clinical evaluation.

    For additional education, listen to Tick Boot Camp's interview with Dr. Medeya Tsnobiladze on the neurological and cardiovascular impacts of Lyme disease.

    Oral vs. Intravenous vs. Intramuscular Antibiotics

    Dr. Teulières discusses the advantages and limitations of different antibiotic administration routes.

    Oral antibiotics are taken by mouth and absorbed through the gastrointestinal tract.

    Intravenous antibiotics are delivered directly into a vein.

    Intramuscular antibiotics are administered through injection into muscle tissue.

    He explains that his proposed treatment strategy may involve different administration routes depending on the patient's symptoms and clinical circumstances.

    Dr. Teulières expresses concern about the gastrointestinal effects of prolonged oral antibiotic use.

    He also discusses considering injectable medications for certain neurological presentations.

    However, intravenous or intramuscular antibiotics are not inherently more effective than oral medications.

    For many manifestations of Lyme disease, appropriately selected oral antibiotics are effective.

    Injectable therapies can introduce additional risks, including line infections, blood clots, and administration complications.

    Protecting the Gut Microbiome During Lyme Disease Treatment

    Dr. Teulières emphasizes the importance of considering intestinal microbiome health during antibiotic treatment.

    The gut microbiome contains diverse microorganisms that contribute to digestion, metabolism, and other biological processes.

    Antibiotics can disrupt these microbial communities.

    Potential consequences may include gastrointestinal symptoms and antibiotic-associated infections.

    Dr. Teulières believes his proposed treatment breaks may provide opportunities for the microbiome to recover.

    However, evidence has not established that his sequential approach reliably prevents microbiome disruption.

    The effects of antibiotics depend on the specific medication, duration, dose, and patient.

    Treating Lyme Disease and Co-Infections

    The conversation also addresses the possibility of multiple infections contributing to complex illness.

    Dr. Teulières explains that clinicians may need to consider bacterial, parasitic, or viral conditions when evaluating patients.

    He believes sequential treatment strategies could provide opportunities to address different diagnosed infections at different times.

    However, the presence of Lyme disease does not automatically establish additional infections.

    Each suspected infection requires appropriate evaluation.

    Treatment choices should be based on clinical findings and reliable diagnostic information rather than assuming that every symptom represents an additional pathogen.

    Can Antibiotics Have Antiviral Effects?

    Dr. Teulières briefly discusses research into possible antiviral effects of certain antibiotic classes.

    He specifically mentions macrolides.

    Some antibiotics have demonstrated antiviral or immunomodulatory activity in laboratory settings.

    However, these findings do not establish that antibiotics are effective clinical treatments for viral infections.

    Antibiotics should not be used to treat viral illnesses without a specific evidence-supported indication.

    This portion of the interview reflects an area of scientific interest rather than a validated treatment recommendation.

    Intravenous Immunoglobulin and Complex Chronic Illness

    Dr. Teulières also discusses the possibility of using intravenous immunoglobulin, or IVIG, alongside other treatments in selected patients.

    IVIG is made from pooled antibodies collected from donated human plasma.

    It is used for certain immune deficiencies, autoimmune conditions, and neurological disorders.

    Dr. Teulières describes how intravenous treatment may allow clinicians to coordinate different therapies when medically appropriate.

    However, IVIG is not a routine or established treatment for Lyme disease itself.

    Its use requires a specific medical indication and careful consideration of risks.

    Sequential Antibiotics and the Rehabilitation Process

    Toward the end of the interview, Rich connects Dr. Teulières' approach to Tick Boot Camp's broader observations about chronic illness recovery.

    Rich emphasizes that the goal of treatment should not be limited to reducing an infectious burden.

    Patients may also need to recover from the physical and emotional consequences of prolonged illness.

    He discusses how aggressive interventions can create additional challenges if they produce significant adverse effects or functional setbacks.

    Dr. Teulières agrees that treatment should be used carefully and thoughtfully.

    Their conversation reinforces the importance of balancing medical treatment with patient safety, tolerability, and quality of life.

    How Does Dr. Teulières' Approach Compare With Lyme Disease Guidelines?

    Sequent

13. Episode 618: Are Lyme Herxheimer Reactions Necessary for Healing? Dr. Casey Kelley | LIVE from ILADS

    02.11.202620 Min.Staffel 1 · Folge 618Als Nächstes

    Do you have to feel worse before you get better from Lyme disease? And could pushing through severe Herxheimer reactions actually make recovery more difficult? In this LIVE from ILADS interview, Tick Boot Camp …

    Shownotes

    Do you have to feel worse before you get better from Lyme disease? And could pushing through severe Herxheimer reactions actually make recovery more difficult?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reunites with Dr. Casey Kelley, MD, a functional medicine physician, Lyme disease survivor, and founder of Case Integrative Health in the Chicago area, for an important conversation about Jarisch-Herxheimer reactions, Lyme disease treatment, inflammation, neuroplasticity, and the physical and emotional rehabilitation involved in chronic illness recovery.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the discussion explores one of the most debated questions in the Lyme disease community: Is a Herxheimer reaction a necessary sign that treatment is working, or can excessive inflammation interfere with healing?

    Dr. Kelley draws on her experience as both a physician and former Lyme disease patient to explain what a Herxheimer reaction is, why symptoms may temporarily worsen during treatment, and why she believes aggressive treatment should not come at the expense of a patient's ability to function.

    Rich also introduces Tick Boot Camp's PARM healing framework: Prehabilitation, Assist, Rehabilitate, and Maintenance, which reflects patterns observed through hundreds of patient interviews.

    Together, they explore why recovery is rarely linear, why patients need individualized treatment plans, and how nervous system regulation and neuroplasticity may play a role in rehabilitation.

    The conversation also celebrates an encouraging milestone: Dr. Kelley is expanding Case Integrative Health to improve patient access to care.

    Meet Dr. Casey Kelley, MD

    Dr. Casey Kelley, MD, is a functional medicine physician and founder of Case Integrative Health, a Chicago-area practice focused on complex chronic illnesses.

    Her clinical interests include Lyme disease and associated infections, immune dysfunction, inflammation, and integrative approaches to patient care.

    Dr. Kelley also brings personal experience to her work.

    As a former Lyme disease patient, she understands what it feels like to experience debilitating symptoms while appearing outwardly healthy.

    During the interview, she recalls living with postural orthostatic tachycardia syndrome (POTS), which made standing and everyday activities difficult.

    Her recovery journey helped shape her approach to individualized treatment and rehabilitation.

    Dr. Kelley has appeared on Tick Boot Camp multiple times, sharing her experiences and insights into chronic illness recovery.

    Case Integrative Health Is Expanding

    Rich begins by congratulating Dr. Kelley on the growth of her medical practice.

    At the time of the interview, Case Integrative Health had two locations, with plans to open a third.

    Dr. Kelley explains that the expansion is primarily about improving access to care.

    Her practice offers intravenous therapies, which may require patients to attend appointments regularly.

    In the Chicago area, traffic and travel distances can make frequent visits challenging, especially for people experiencing significant fatigue or other chronic symptoms.

    She hopes additional locations will reduce some of those barriers.

    The conversation highlights an important issue for people with chronic illness: treatment access involves more than finding a healthcare provider. Transportation, physical limitations, appointment frequency, and financial resources can all affect a patient's ability to receive care.

    What Is a Jarisch-Herxheimer Reaction?

    One of the main topics of the interview is the Jarisch-Herxheimer reaction, commonly called a Herx.

    Dr. Kelley explains that the reaction was originally described in patients receiving treatment for syphilis, another infection caused by spirochete bacteria.

    A Jarisch-Herxheimer reaction is an acute inflammatory response that can occur after antimicrobial treatment for certain bacterial infections.

    In Lyme disease, it may involve a temporary worsening of symptoms after antibiotics are started.

    Dr. Kelley describes patients experiencing:

    • Increased fatigue
    • Worsening pain
    • Flu-like symptoms
    • Generalized discomfort
    • A feeling resembling a severe hangover
    • Temporary worsening of existing symptoms

    She explains that these reactions can vary considerably between individuals.

    Some people experience relatively mild discomfort, while others report more significant symptoms.

    Importantly, not every symptom flare during treatment is a Jarisch-Herxheimer reaction. Medication side effects, allergic reactions, disease progression, and other medical complications can also cause worsening symptoms.

    Is Herxing a Good Sign That Lyme Treatment Is Working?

    Rich asks Dr. Kelley about a common belief in the Lyme disease community: that experiencing a strong Herxheimer reaction means treatment is successfully eliminating an infection.

    Some patients believe they need to push through increasingly severe symptoms to make progress.

    Dr. Kelley challenges that assumption.

    She explains that although inflammatory reactions can occur during treatment, more intense symptoms do not necessarily mean better outcomes.

    In her clinical approach, the goal is not to make patients as uncomfortable as possible.

    Instead, she tries to balance treatment with the patient's ability to tolerate it.

    A severe Herxheimer reaction is not required for successful Lyme disease treatment, and the intensity of a reaction is not a reliable measure of treatment effectiveness.

    Dr. Kelley emphasizes that treatment should be individualized and that patients should communicate significant symptom changes to their healthcare professionals.

    Can You Recover From Lyme Disease Without Herxing?

    Dr. Kelley describes patients who improve without experiencing noticeable Herxheimer reactions.

    She acknowledges that some people become concerned when treatment does not cause an obvious symptom flare.

    They may wonder whether their medication is working or whether they need a more aggressive approach.

    Dr. Kelley explains that she has seen patients make progress without experiencing significant treatment-related worsening.

    Her message is encouraging for patients who fear they must endure severe discomfort to recover.

    Not experiencing a Herxheimer reaction does not mean treatment is failing.

    Likewise, experiencing a reaction does not establish that a treatment is effective.

    Treatment response should be evaluated through appropriate clinical assessment rather than symptom worsening alone.

    How Much Herxing Is Too Much?

    Rich asks Dr. Kelley where she draws the line between manageable treatment-related discomfort and symptoms that warrant changing the treatment plan.

    Dr. Kelley explains that she becomes concerned when patients experience severe functional limitations.

    Examples include being unable to get out of bed, care for children, complete essential activities, or think clearly.

    She believes prolonged, debilitating symptom flares should prompt reassessment rather than automatic encouragement to push harder.

    In the interview, Dr. Kelley discusses supportive approaches used in her practice, including measures intended to address discomfort and inflammation.

    However, supplements, detoxification products, and other supportive therapies should not be assumed to prevent or treat a true Jarisch-Herxheimer reaction.

    Severe, persistent, or unexpected symptoms during treatment require medical evaluation. Patients should not independently stop, increase, or reduce prescribed medications without appropriate clinical guidance.

    Why More Aggressive Treatment Is Not Always Better

    Dr. Kelley explains that patients differ significantly in their tolerance of medications and other interventions.

    Some patients can tolerate complex treatment regimens.

    Others experience substantial symptoms or adverse effects from relatively small changes.

    She emphasizes that treatment decisions should account for the individual patient's medical history, symptoms, functional status, and response.

    Rich asks whether reducing treatment intensity might slow the process of addressing an infection.

    Dr. Kelley suggests that treatment intensity and overall recovery are not always the same thing.

    Her concern is that excessive symptom burden may create additional challenges that patients must overcome during rehabilitation.

    The broader takeaway is that successful care requires balancing effectiveness, safety, and tolerability.

    Patients should not interpret worsening symptoms as a reason to continue an intervention without reassessment.

    Why Dr. Kelley's Personal Lyme Disease Experience Matters

    Rich asks whether physicians who have personally experienced Lyme disease bring a different perspective to patient care.

    Dr. Kelley believes lived experience can deepen a clinician's empathy and understanding.

    She recalls struggling to sit upright, think clearly, and complete ordinary activities while appearing healthy to others.

    Those experiences helped her understand how difficult invisible illnesses can be.

    However, she also emphasizes that physicians do not need to have experienced a particular disease to treat it effectively.

    She believes the most important qualities include clinical knowledge, compassion, careful observation, and the ability to tailor care to each patient.

    Her perspective highlights the value of combining medical expertise with genuine understanding of the patient's experience.

    Why Lyme Disease Recovery Is Not Linear

    Rich and Dr. Kelley discuss how recovery from prolonged illness often involves periods of progress followed by setbacks.

    Some patients improve steadily.

    Others experience fluctuating symptoms, changing functional abilities, or periods when additional medical evaluation is needed.

    Dr. Kelley explains that these experiences can be especially frustrating when patients expect recovery to follow a predictable timeline.

    She encourages recognizing progress even when it occurs gradually.

    The discussion also emphasizes that patients may need different forms of support at different stages of their journey.

    Medical treatment, physical rehabilitation, psychological support, and ongoing prevention can all have roles depending on the individual's circumstances.

    Introducing Tick Boot Camp's PARM Healing Framework

    Rich introduces a framework developed from patterns observed through Tick Boot Camp's extensive patient interviews.

    The framework is called PARM, representing four interconnected stages of recovery.

    P — Prehabilitation

    Prehabilitation involves preparing and supporting the patient before or alongside more intensive treatment.

    Depending on the person's medical needs, this may include addressing nutritional concerns, sleep disturbances, physical limitations, or other health conditions.

    The goal is to improve readiness and tolerance for appropriate medical care.

    A — Assist

    Rich uses the term Assist to emphasize supporting the body's response to illness rather than viewing treatment exclusively as a battle against microbes.

    For infections requiring antimicrobial therapy, appropriate medications remain essential.

    Other supportive interventions may help address symptoms or coexisting health concerns.

    R — Rehabilitate

    Rehabilitation involves addressing functional limitations that may remain during or after treatment.

    This can include physical conditioning when medically appropriate, occupational rehabilitation, and support for cognitive or emotional challenges.

    For some patients, rehabilitation may require a gradual, individualized approach.

    M — Maintenance

    Maintenance focuses on sustaining improvements, managing ongoing health needs, and reducing preventable risks.

    For Lyme disease, this includes continued tick bite prevention and prompt evaluation of possible reinfection.

    Rich emphasizes that the framework is not necessarily linear.

    Patients may need to revisit different aspects of care as their circumstances change.

    PARM is Tick Boot Camp's observational framework, not a clinically validated Lyme disease treatment protocol.

    Celebrating Recovery: Dr. Kelley's Disco Balls

    Dr. Kelley shares a tradition from her medical practice.

    Her team refers to patients who have made meaningful progress in rehabilitation as disco balls.

    The name reflects their desire to celebrate recovery milestones.

    Dr. Kelley explains that working with complex chronic illness can be emotionally demanding for patients and healthcare professionals alike.

    Recognizing meaningful improvements helps reinforce hope and acknowledges the work patients have invested in their recovery.

    For someone who has spent years struggling with basic activities, being able to walk, exercise, work, or participate in family life can represent an extraordinary achievement.

    Dr. Kelley believes these milestones deserve celebration.

    Recovering From POTS: Learning to Trust the Body Again

    Dr. Kelley shares a personal example from her experience with POTS.

    At one point, standing was frightening because she feared fainting and injuring herself.

    Even after her physical condition improved, she needed time to regain confidence in activities that had previously felt unsafe.

    She describes gradually becoming more comfortable standing, walking, and eventually returning to exercise.

    Her experience illustrates how recovery from a prolonged medical condition can involve both physical and emotional adjustment.

    The fear of symptoms returning may persist even after substantial improvement.

    For patients with POTS or other conditions involving exercise intolerance, rehabilitation must be adapted to their medical status and should not involve pushing through unsafe symptoms.

    Fear of Relapse After Lyme Disease

    Rich discusses another challenge that can arise after significant recovery: the fear of becoming seriously ill again.

    He shares Tick Boot Camp co-founder Matt Sabatello's experience of progressing from long-distance running to being bedbound during his Lyme disease journey.

    After a prolonged period of illness, Matt gradually regained significant physical function and returned to running.

    Rich celebrates that progress while acknowledging that the fear of relapse can remain.

    The discussion highlights an important reality for people recovering from chronic illness.

    Regaining physical abilities does not automatically eliminate the emotional impact of having lost them.

    Dr. Kelley recognizes that rebuilding confidence may take time.

    Supportive rehabilitation can help patients gradually resume activities when medically appropriate.

    Neuroplasticity and Brain Retraining During Rehabilitation

    Rich asks Dr. Kelley about the role of neuroplasticity in recovery.

    Neuroplasticity refers to the nervous system's ability to adapt and change through experience, learning, and repeated activity.

    Dr. Kelley discusses how prolonged pain, illness, and stressful experiences may influence patterns of attention, fear, and symptom perception.

    She believes some patients may benefit from learning to respond differently to certain sensations and situations.

    Rich and Dr. Kelley emphasize that these experiences do not mean symptoms are imaginary.

    Pain and other symptoms are real, even when nervous system processes influence how they are experienced.

    Research supports certain psychologically informed approaches for managing chronic pain and related functional difficulties.

    However, brain retraining is not an established cure for Lyme disease, persistent infection, POTS, or all symptoms following treatment.

    Its potential role should be evaluated alongside appropriate medical assessment and individualized care.

    For related conversations, explore Tick Boot Camp's interview with Ben Ahrens about neuroplasticity.

    Why Medical Validation Matters When Discussing Brain Retraining

    Dr. Kelley acknowledges that conversations about the brain and nervous system can be difficult for people who have experienced medical dismissal.

    Many patients have previously been told that their symptoms are psychological or that nothing is physically wrong.

    As a result, suggestions involving brain retraining may feel invalidating.

    Dr. Kelley makes an important distinction.

    She recognizes that patients can experience genuine physiological illness while also benefiting from strategies that address pain processing, fear, stress responses, or functional limitations.

    These approaches are not mutually exclusive.

    A patient can need medical treatment for a physical condition and also benefit from supportive rehabilitation.

    The key is ensuring that brain-based interventions are not used to dismiss symptoms or discourage further medical investigation when appropriate.

    Finding Purpose After Chronic Illness

    Rich and Dr. Kelley also discuss how difficult health experiences can change a person's perspective on life.

    For some patients, recovery creates opportunities to reconsider priorities, relationships, and personal goals.

    Rich reflects on how the Lyme disease journey has influenced Tick Boot Camp's advocacy mission.

    Dr. Kelley's experience similarly shaped her decision to help others navigating complex illnesses.

    They acknowledge that finding meaning can be an important part of some people's recovery stories.

    However, patients should not feel obligated to discover a greater purpose in their suffering.

    Everyone deserves compassionate care regardless of how they interpret their illness.

    How to Learn More About Dr. Casey Kelley

    Dr. Kelley is the founder of Case Integrative Health, serving patients in the Chicago area.

    Her practice focuses on functional and integrative approaches to complex chronic illness.

    During the interview, she discusses the practice's expansion and its efforts to improve access to services for patients who may struggle with frequent travel.

    Visit Case Integrative Health for information about the medical team, available services, locations, and appointments.

    Key Takeaways

    • A Herxheimer reaction is an inflammatory response associated with treatment of certain infections. It can cause temporary worsening of symptoms.
    • Herxing is not required for recovery. Patients can improve without experiencing a noticeable Jarisch-Herxheimer reaction.
    • More severe symptoms do not prove treatment is more effecti

14. Episode 617: Healing Chronic Lyme: Mind-Body Connection & Nervous System Regulation – Dr. Jacey Goddard | LIVE from ILADS

    01.11.202620 Min.Staffel 1 · Folge 617Als Nächstes

    What if healing from chronic Lyme disease involves more than treating infections—and includes learning how to reconnect with your body, regulate your nervous system, and support your natural capacity for …

    Shownotes

    What if healing from chronic Lyme disease involves more than treating infections—and includes learning how to reconnect with your body, regulate your nervous system, and support your natural capacity for recovery?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Jacey Goddard, DO, a triple board-certified osteopathic physician from Maine, to explore the connection between Lyme disease, nervous system dysregulation, chronic pain, medical trauma, mind-body healing, and neuroplasticity.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, this conversation challenges the idea that recovering from complex chronic illness is simply about finding the next medication, supplement, or treatment protocol.

    Dr. Goddard shares how her own difficult health journey shaped her approach to medicine and inspired her to help patients develop a healthier relationship with their bodies.

    She explains why people living with Lyme disease, fibromyalgia, POTS, migraines, post-COVID conditions, and other complex illnesses may benefit from addressing nervous system regulation alongside appropriate medical care.

    Rich and Dr. Goddard also discuss the sympathetic and parasympathetic nervous systems, the influence of chronic stress, the importance of emotional and physical connection, and why no two patients should be expected to follow identical healing journeys.

    Throughout the conversation, Dr. Goddard emphasizes a message of hope:

    Even when an illness is complicated and answers are difficult to find, there may still be meaningful ways to support healing and improve quality of life.

    Meet Dr. Jacey Goddard, DO

    Dr. Jacey E. Goddard, DO is a triple board-certified osteopathic physician practicing in Topsham, Maine.

    Her medical training includes board certification in:

    • Family Medicine
    • Integrative Medicine
    • Neuromusculoskeletal Medicine and Osteopathic Manipulative Medicine

    Dr. Goddard practices at RiverTree Osteopathic Health, where she focuses on hands-on osteopathic treatment and individualized approaches to complex health conditions.

    Her patients include people experiencing:

    • Lyme disease and other tick-borne illnesses
    • Fibromyalgia
    • Chronic migraines
    • Persistent pain
    • Postural orthostatic tachycardia syndrome (POTS)
    • Post-COVID symptoms
    • Other difficult-to-treat conditions

    Dr. Goddard combines her medical training with an interest in the relationship between physical health, emotional well-being, and nervous system function.

    She is also the creator of The Art & Science of Healing from Within, an educational program focused on reconnecting with the body and developing practical mind-body awareness skills.

    When Even a Doctor Is Told There's Nothing More to Do

    Dr. Goddard begins by sharing that her interest in complex chronic illness is deeply personal.

    She has experienced her own prolonged health challenges and understands the frustration of seeking answers when medical professionals cannot explain what is happening.

    Despite being a physician herself, she encountered responses suggesting that her symptoms were psychological or that nothing more could be done.

    Those experiences influenced how she now approaches patients.

    She recognizes that people living with chronic illness may already have spent years searching for explanations, undergoing treatments, and trying to regain their health.

    Being told there are no additional options can be especially discouraging.

    Dr. Goddard believes clinicians should remain curious, compassionate, and open to helping patients improve their well-being, even when a condition is not fully understood.

    Her experience reinforces an important message for the Lyme disease community: A patient deserves to be heard and supported even when the answers are incomplete.

    Lyme Disease in Maine: Borrelia, Bartonella, and Babesia

    Rich asks Dr. Goddard about the prevalence of tick-borne diseases in Maine.

    She describes tick exposure as a significant concern and recalls particularly high tick activity during the preceding spring.

    Their conversation turns to three pathogen groups frequently discussed in the Lyme disease community:

    Borrelia: Bacteria associated with Lyme disease and certain relapsing fever illnesses.

    Bartonella: Bacteria responsible for several different infectious diseases, including cat-scratch disease.

    Babesia: Tick-borne parasites that infect red blood cells and can cause babesiosis.

    Rich explains that Tick Boot Camp has interviewed an increasing number of patients who report diagnoses involving multiple infections.

    He asks whether this reflects changes in tick populations, greater awareness, better diagnostic testing, or improvements in clinical recognition.

    Dr. Goddard believes several factors may contribute.

    She also emphasizes that patients often experience multiple overlapping health challenges.

    Although co-infections can occur, not every person with Lyme disease has Bartonella or Babesia, and the frequency of co-infections varies by region and exposure history.

    What Is Terrain Theory, and How Does It Relate to Lyme Disease?

    One of the central themes of the interview is Dr. Goddard's interest in what she calls terrain theory.

    She uses the term to describe the factors that may influence a person's vulnerability to illness and capacity to recover.

    Rather than focusing exclusively on an infectious organism, she encourages patients and clinicians to consider the broader conditions affecting health.

    These may include:

    • Sleep and recovery
    • Chronic stress
    • Nervous system regulation
    • Environmental exposures
    • Nutrition and general health
    • Previous trauma
    • Existing medical conditions
    • Individual physiological differences

    Dr. Goddard explains that some patients report becoming more symptomatic during periods of significant physical or emotional stress.

    She believes that understanding these patterns can help patients identify areas where additional support may be beneficial.

    This perspective does not mean that stress causes Lyme disease or that improving lifestyle factors can eliminate an established infection.

    Lyme disease is caused by infection with Borrelia bacteria. Supportive care may complement appropriate diagnosis and treatment but does not replace it.

    Understanding Threat, Vulnerability, and Chronic Illness

    Rich introduces an analogy from retired U.S. General Stanley McChrystal's book Risk.

    He describes risk as the interaction between a threat and a person's vulnerability.

    Applied to tick-borne illness, the threat might involve exposure to an infected tick.

    Vulnerability could involve individual health circumstances or other factors influencing the body's response.

    Rich connects this framework to Dr. Goddard's discussion of terrain.

    They explore how environmental changes, expanding tick activity, and wildlife populations may influence opportunities for exposure.

    Dr. Goddard then shifts the conversation toward the aspects of health that people may be able to support in their everyday lives.

    Her goal is to help patients recognize that while they cannot control every exposure or medical outcome, they may still have opportunities to improve their comfort, coping skills, and overall well-being.

    Nervous System Dysregulation and Chronic Lyme Disease

    Dr. Goddard discusses how chronic illness can affect a person's relationship with their body.

    People experiencing persistent symptoms may become highly attentive to pain, fatigue, dizziness, or other physical sensations.

    Over time, illness-related stress can contribute to patterns of heightened vigilance and difficulty relaxing.

    Rich introduces the sympathetic and parasympathetic branches of the autonomic nervous system.

    The sympathetic nervous system helps coordinate responses to stress and perceived threats.

    The parasympathetic nervous system supports functions such as digestion, recovery, and aspects of rest.

    Both systems are essential, and healthy regulation involves flexibility rather than remaining permanently in one state.

    Dr. Goddard believes learning to recognize and respond to nervous system patterns can help some patients manage symptoms and improve their daily functioning.

    However, nervous system dysregulation is not an established explanation for every symptom of Lyme disease, and nervous system exercises cannot substitute for treating an active infection.

    Are We Becoming Disconnected From Our Bodies?

    Dr. Goddard argues that modern life often encourages people to remain constantly busy and focused on external expectations.

    Work, technology, social obligations, and everyday responsibilities can make it difficult to recognize physical and emotional needs.

    She describes how people may become disconnected from their own internal experiences.

    Rather than noticing fatigue and responding with appropriate rest, someone may continue pushing through demanding schedules.

    Rather than recognizing stress, they may become accustomed to living in a heightened state of tension.

    Dr. Goddard believes reconnecting with the body begins with developing awareness of these patterns.

    She encourages people to approach their bodies with curiosity and compassion instead of frustration or fear.

    Her message is not that patients have created their illnesses through their behavior.

    Instead, she believes that learning to respond more supportively to the body may be valuable during recovery.

    Your Body Is Not Your Enemy

    One of Dr. Goddard's most memorable messages is that the body should be treated as an ally rather than an enemy.

    She recognizes that people living with chronic pain or unpredictable symptoms can develop a difficult relationship with their bodies.

    When symptoms repeatedly interfere with daily life, it is understandable to feel frustrated, frightened, or discouraged.

    Dr. Goddard encourages a different approach.

    Instead of interpreting every sensation as a battle against the body, she suggests asking what support might be helpful in that moment.

    That might involve rest, medical attention, adjusting an activity, practicing a calming exercise, or recognizing a physical limitation.

    She believes that developing a more compassionate relationship with the body can help reduce some of the emotional distress associated with chronic illness.

    This approach does not require patients to ignore symptoms or assume that positive thinking will resolve a medical condition.

    Mind-Body-Spirit Healing: Treating the Whole Person

    Rich and Dr. Goddard explore the relationship between physical, emotional, mental, and spiritual well-being.

    Rich questions whether dividing human experience into separate categories sometimes prevents people from understanding how closely these aspects of life interact.

    Dr. Goddard agrees that health involves interconnected processes.

    She emphasizes that thoughts, emotions, physical sensations, and nervous system activity influence one another.

    For example, persistent pain can affect mood and sleep.

    Poor sleep may worsen pain sensitivity or emotional distress.

    Stress can influence breathing patterns, muscle tension, and other physiological responses.

    These relationships are real, but they do not mean that every physical symptom originates in thoughts or emotions.

    Dr. Goddard's broader message is that comprehensive care should recognize the whole person.

    Mindfulness or Bodyfulness? Learning to Be Present

    Dr. Goddard introduces an interesting alternative to conventional discussions of mindfulness.

    She suggests that some people might benefit from thinking about bodyfulness.

    Rather than focusing exclusively on thoughts, her approach encourages awareness of physical sensations and the experience of being present in the body.

    She describes simple practices such as:

    • Pausing briefly during the day
    • Noticing physical sensations without immediately judging them
    • Becoming aware of breathing
    • Recognizing signs of tension or fatigue
    • Allowing moments of physical comfort
    • Responding to personal needs with patience

    Dr. Goddard emphasizes that these practices do not require elaborate equipment or lengthy meditation sessions.

    She believes small moments of awareness, repeated throughout daily life, can help people develop more supportive habits.

    For patients with trauma histories or conditions that make body awareness uncomfortable, these practices may need to be adapted with professional guidance.

    Neuroplasticity: Can We Change Our Patterns?

    Rich and Dr. Goddard discuss the concept of neuroplasticity, the nervous system's capacity to change through experience and learning.

    Dr. Goddard believes that repeated patterns of attention, behavior, and emotional response can influence how people experience and respond to their bodies.

    She describes working with patients who have experienced panic attacks, palpitations, chronic pain, and post-traumatic stress symptoms.

    According to Dr. Goddard, some patients have reported improvements after learning mind-body awareness techniques.

    These are her clinical observations rather than controlled evidence that the techniques treat the underlying causes of those conditions.

    Neuroplasticity is a well-established biological phenomenon, but specific brain-retraining or mind-body programs vary in their supporting evidence.

    For additional perspectives, explore Tick Boot Camp's interview with Ben Ahrens about neuroplasticity.

    Why Healing Is Not One-Size-Fits-All

    Rich raises concerns about patients adopting identical treatment protocols simply because someone else reported success.

    He describes how groups of patients sometimes begin using the same supplements or treatment approaches together.

    While community support can be valuable, Rich emphasizes that people may have very different diagnoses, symptoms, medical histories, and treatment needs.

    Dr. Goddard agrees.

    She believes individualized care is essential because no two people have identical experiences.

    An intervention that helps one person may not be appropriate for another.

    This applies to medications, supplements, rehabilitation, and mind-body practices.

    Their discussion encourages patients to seek personalized medical guidance rather than assuming that a treatment will work because it helped someone else.

    Medical Trauma and Feeling Dismissed by Healthcare Professionals

    Rich returns to Dr. Goddard's personal experience of seeking medical help.

    He notes that even physicians can encounter dismissive responses when they experience poorly understood symptoms.

    Dr. Goddard acknowledges how painful and frustrating those experiences can be.

    They discuss the term medical gaslighting, including whether every dismissive encounter involves deliberate manipulation or whether some clinicians simply lack sufficient knowledge.

    Dr. Goddard believes intent and understanding matter when evaluating these interactions.

    At the same time, she recognizes that patients may experience real emotional harm regardless of a clinician's intentions.

    The conversation emphasizes the importance of validating patient experiences without allowing painful encounters to define every future healthcare interaction.

    Patients deserve respectful communication, appropriate investigation, and honest discussions about uncertainty.

    Trauma, Stress, and the Healing Process

    Dr. Goddard explains that prolonged illness can itself be traumatic.

    People may experience fear, isolation, financial strain, repeated medical appointments, and uncertainty about their future.

    Some also have previous traumatic experiences that influence how they respond to stress.

    She believes helping patients develop greater emotional and physical awareness may support their ability to cope with these challenges.

    Rich discusses how learning about nervous system responses changed his own understanding of health and personal development.

    Together, they explore the importance of recognizing patterns without judging oneself for having them.

    Trauma-informed care can be an important part of supporting people with chronic illness, but trauma is not a prerequisite for developing Lyme disease, and resolving trauma is not a cure for infection.

    The Art & Science of Healing from Within

    Dr. Goddard discusses the development of her educational course, The Art & Science of Healing from Within.

    She explains that the program originally had a different title: The Art and Science of Being Human.

    Her goal was to teach skills she wishes she had learned earlier in life.

    These include reconnecting with the body, recognizing habitual patterns, and practicing self-awareness throughout ordinary daily activities.

    She ultimately changed the title to emphasize healing and make the purpose of the course clearer.

    Dr. Goddard believes that meaningful change does not always require expensive devices, complicated routines, or spending hours meditating.

    Instead, she encourages people to practice brief moments of connection with themselves throughout the day.

    The course reflects her educational philosophy and personal clinical experience. Its effectiveness as a treatment for Lyme disease has not been established through clinical trials.

    How Osteopathic Medicine Fits Into Her Approach

    As an osteopathic physician, Dr. Goddard emphasizes the relationship between the body's structure and function.

    Her primary clinical focus is osteopathic manipulative treatment, a hands-on approach used by some physicians to evaluate and address musculoskeletal dysfunction.

    She integrates this work with her interest in whole-person care.

    Patients may seek osteopathic treatment for concerns involving pain, movement, or physical discomfort.

    The effectiveness of osteopathic manipulative treatment varies by condition, and it should not be considered a substitute for antimicrobial treatment when an active bacterial infection requires it.

    Dr. Goddard's approach reflects her belief that patients may benefit from attention to both their diagnosed medical conditions and their overall functioning.

    How to Work With Dr. Jacey Goddard

    Dr. Goddard practices at RiverTree Osteopathic Health</strong

15. Episode 616: How Tick Bites Cause Disease: Monica Cipriani on Lyme Disease, Alpha-Gal & Tick Saliva

    31.10.20261 Std. 24 Min.Staffel 1 · Folge 616Als Nächstes

    Read transcriptWhat actually happens when a tick bites you—and how can something so small manipulate the human immune system long enough to feed and potentially transmit disease? Tick-borne disease researcher …

    Shownotes

    Read transcript

    What actually happens when a tick bites you—and how can something so small manipulate the human immune system long enough to feed and potentially transmit disease?

    Tick-borne disease researcher Monica Cipriani joins Rich Johannesen, co-founder of Tick Boot Camp Podcast, for an in-depth exploration of the biology of the tick bite, Lyme disease, alpha-gal syndrome, tick saliva, immune modulation, and tick-borne disease transmission.

    This conversation was recorded in person at the Tick Boot Camp studio immediately after Monica led our team on a tick-dragging field day across Long Island, where we collected hundreds of ticks from a farm, public trail, and residential environment—including clusters of nearly invisible lone star tick larvae known as “tick bombs,” blacklegged ticks, and an invasive Asian longhorned tick.

    See what we found while dragging for ticks on Long Island.

    From Lyme Disease Caregiver to Tick-Borne Disease Researcher

    Monica's work is deeply personal.

    With bachelor's and master's training in microbiology, she transitioned into epidemiology to focus on research, public health, education, advocacy, and policy surrounding tick-borne diseases.

    Her mother endured years of unexplained symptoms—including hives, joint pain, brain fog, and cognitive changes—before eventually receiving a Lyme disease diagnosis. Years later, Monica watched her young daughter develop concerning neurological, behavioral, sleep, and physical symptoms while living in Kentucky. After numerous medical appointments, her family traveled to New York, where her daughter was diagnosed with Lyme disease.

    Those experiences helped shape Monica's determination to study why tick-borne diseases can be missed, misclassified, and misunderstood—and how research can help patients receive answers sooner.

    How Does a Tick Find and Bite a Human?

    Monica takes listeners inside the remarkable biology of ticks.

    Ticks are arachnids, not insects, and different species can act as vectors for different pathogens. The episode explores three important species:

    • Blacklegged tick ( Ixodes scapularis ) — associated with Lyme disease and other tick-borne infections
    • Lone star tick ( Amblyomma americanum ) — strongly associated with alpha-gal syndrome and capable of transmitting several pathogens
    • American dog tick ( Dermacentor variabilis ) — another common human-biting tick

    Using a specialized sensory structure called the Haller's organ, ticks can detect environmental signals associated with potential hosts.

    Some ticks wait for a host to pass close enough to grab onto, while lone star ticks can be particularly aggressive in seeking hosts.

    Once aboard, ticks crawl toward locations where they can establish a successful blood meal.

    Tick Saliva: An Evolutionary Tool for Feeding

    One of the most fascinating parts of the conversation focuses on tick saliva.

    A tick needs to remain attached long enough to complete its blood meal, but the human body has numerous defenses designed to detect an injury or foreign organism.

    Monica explains how components of tick saliva can interfere with those defenses.

    The discussion explores how ticks can:

    • Reduce pain at the bite site
    • Suppress itching and histamine-related responses
    • Interfere with blood clotting
    • Affect blood vessels and platelet activity
    • Modulate local immune responses
    • Anchor themselves using specialized mouthparts and cement-like substances
    • Alter salivary molecules throughout the feeding process

    Rather than simply suppressing the immune system completely, Monica describes how ticks can modulate the local immune environment in ways that help preserve viable tissue and allow feeding to continue.

    That means a tick bite isn't simply a tiny wound through which a pathogen enters. The tick itself may help create the biological environment in which transmission occurs.

    Why Tick-Borne Disease Is About More Than Lyme

    Ticks may acquire microorganisms during earlier blood meals from wildlife and subsequently expose another host during feeding.

    The conversation examines the ecological relationship among ticks, wildlife, pathogens, and humans and why understanding the vector is critical to understanding tick-borne illness.

    Monica and Rich discuss Lyme disease and Borrelia, along with other tick-associated threats including:

    • Ehrlichiosis
    • STARI
    • Powassan virus
    • Bourbon virus
    • Heartland virus
    • Alpha-gal syndrome

    The discussion also explores why the length of attachment matters while emphasizing an important point: people frequently do not know exactly when a tick attached.

    Larval and nymphal ticks can be extraordinarily difficult to see. During Tick Boot Camp's Long Island field work, the team collected larvae so small that hundreds looked almost like specks of pepper.

    Learn more about ticks and tick-borne disease in this University of Kentucky resource co-authored by Monica.

    Alpha-Gal Syndrome and the Lone Star Tick

    A major focus of Monica's current research is alpha-gal syndrome (AGS), sometimes called the red meat allergy.

    Alpha-gal syndrome is associated with tick bites—particularly bites from the lone star tick in the United States—and can cause an immune reaction to alpha-gal, a sugar found in most non-primate mammals and mammal-derived products.

    For some people, reactions may be relatively mild. For others, exposure can potentially result in severe allergic reactions, including anaphylaxis.

    But one of the biggest scientific questions remains:

    Why can two people be bitten by similar ticks and have completely different outcomes?

    Monica discusses the unanswered questions surrounding individual immune responses, sensitization, demographics, environmental exposures, and the unusual way a tick bite introduces alpha-gal alongside a complex mixture of salivary molecules.

    Her research aims to better understand those patterns and the patient experience surrounding this emerging condition.

    Learn more about Monica Cipriani's epidemiology and alpha-gal research.

    Lyme Disease, Research, and the Questions Patients Are Asking

    The episode also tackles difficult questions that remain important to the Lyme community, including the possibility of congenital transmission of Lyme disease.

    Monica explains why researchers must remain willing to investigate unanswered questions rather than dismiss possibilities before adequate research exists.

    As both a scientist and a mother whose family has been affected by Lyme disease, she brings a rare perspective to the conversation: understanding the scientific process while also understanding what it feels like when a patient or parent believes something important is being missed.

    Why Better Tick Research Matters

    Monica argues that improving Lyme and tick-borne disease care requires stronger communication among researchers, public health professionals, clinicians, and patients.

    Research ultimately helps create the evidence clinicians can use to recognize disease, improve diagnosis, develop treatments, and establish better standards of care.

    For Monica, that work comes back to one goal: helping people feel heard while asking the scientific questions that could lead to better answers.

    From the Field to the Tick Boot Camp Studio

    This interview capped an extraordinary day of hands-on tick research on Long Island.

    Monica, her husband Dr. Andre Ene, Tick Boot Camp co-founders Matt Sabatello and Rich Johannesen, filmmaker Reece Robinson, and the production team dragged for ticks at Malik Farms in Coram, the Rails to Trails path in Rocky Point, and a residential property and nearby groundwater recharge basin.

    The team encountered hundreds of lone star tick larvae, blacklegged ticks, multiple “tick bombs,” and an invasive Asian longhorned tick identified by Monica.

    The experience made the subject of this interview tangible: ticks capable of affecting human and animal health aren't only deep in the woods. They can be present where people live, work, walk, farm, exercise, and spend time with their families.

    Explore the Long Island tick-dragging field day, photos, videos, species, and findings.

    Tick Boot Camp Resources

    • Tick Boot Camp Tick Bite Blueprint
    • Lyme Disease Testing
    • More Tick-Borne Disease Researcher Interviews

    Transkript

16. Episode 615: From Chronic Lyme to Lyme Disease Advocacy – Eva Scarano of LymeLnk | LIVE from ILADS

    30.10.202621 Min.Staffel 1 · Folge 615Als Nächstes

    What happens when someone living with chronic Lyme disease uses their own experience to tackle one of the biggest challenges facing the Lyme community: a lack of public awareness, understanding, and compassion? …

    Shownotes

    What happens when someone living with chronic Lyme disease uses their own experience to tackle one of the biggest challenges facing the Lyme community: a lack of public awareness, understanding, and compassion?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Eva Scarano, founder of LymeLnk, to discuss her personal Lyme disease journey, the creation of a patient-centered advocacy organization, and her mission to make Lyme disease education accessible to the general public.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores how Eva transformed her experiences with Lyme disease into a nonprofit organization focused on storytelling, community engagement, tick prevention, early detection, and public education.

    Eva shares how she was diagnosed with Lyme disease in 2016 after developing a bull's-eye rash and flu-like symptoms, how her health deteriorated following a period of improvement, and how reaching her lowest point during graduate school inspired her to rethink her relationship with chronic illness.

    Through her graduate studies at Parsons School of Design, Eva began researching the Lyme disease community and interviewing patients, advocates, and organizations to better understand where education and awareness efforts could have the greatest impact.

    That research ultimately led to the creation of LymeLnk, an organization working to make basic Lyme disease knowledge as familiar to the public as other common health and safety information.

    Rich and Eva discuss Lyme disease stigma, the importance of patient stories, community-centered design, tick-borne disease awareness in California, the role of climate and environmental changes, and innovative approaches to educating children and families.

    Meet Eva Scarano: Founder of LymeLnk

    Eva Scarano is the founder of LymeLnk, a community-focused Lyme disease education and awareness organization developed through her graduate studies at Parsons School of Design in New York City.

    Before launching LymeLnk, Eva spent approximately six years working in corporate technology, including sales and product marketing.

    She later pursued graduate studies in strategic design and management, a discipline that applies human-centered design principles to complex organizational and social challenges.

    Eva's own experiences with Lyme disease inspired her to apply these methods to public health education and community advocacy.

    Rather than building another organization focused primarily on research funding, clinical education, or legislative advocacy, she identified an opportunity to reach people who know very little about Lyme disease.

    Her goal is straightforward: Help the general public understand the basics of Lyme disease so more people can recognize risks, take preventive action, and respond compassionately to those living with the illness.

    A Textbook Lyme Disease Diagnosis in 2016

    Eva's Lyme disease story begins in 2016 during her senior year of college in Ann Arbor, Michigan.

    She developed symptoms commonly associated with early Lyme disease, including:

    • A bull's-eye rash
    • Flu-like symptoms
    • Significant fatigue
    • Cognitive difficulties

    Eva visited an urgent care facility, where her symptoms were recognized and she received a Lyme disease diagnosis.

    She subsequently worked with a practitioner experienced in treating Lyme disease.

    Eva describes undergoing approximately three months of treatment involving antibiotics and herbal therapies.

    The experience was difficult.

    She recalls waking up to take an economics final exam and realizing she could not read the material.

    With assistance from her university's disability services, she was able to complete her academic responsibilities.

    Following treatment, Eva experienced approximately two years of significant improvement.

    At the time, she believed the worst of her Lyme disease journey might be behind her.

    When Symptoms Returned After Moving to San Francisco

    In 2019, Eva moved into an apartment in San Francisco that she describes as having significant mold problems.

    She associates that environmental exposure with a deterioration in her health.

    After experiencing a period of relative stability, she began struggling with recurring symptoms and increasing health challenges.

    Eva describes the following years as an unpredictable cycle of improvements and setbacks.

    She continued working, traveling, and maintaining an active lifestyle while simultaneously managing her health.

    Although Eva believes the mold exposure contributed to her decline, the interview does not establish a medical cause-and-effect relationship between the apartment and her subsequent symptoms.

    Her experience reflects the difficulty many patients face when trying to understand which factors may be contributing to a complex illness.

    Reaching Her Lowest Point During Graduate School

    By 2023, Eva was attending graduate school at Parsons School of Design in New York City.

    She was also teaching Pilates part-time, traveling for friends' weddings, and trying to maintain the active lifestyle she had enjoyed before becoming ill.

    At the same time, she was managing multiple health conditions and ongoing symptoms.

    Eva describes herself as someone who naturally enjoys staying busy.

    Slowing down did not come easily.

    Eventually, her health deteriorated to the point that she could no longer continue at the same pace.

    She describes 2023 as the sickest period of her life.

    During the interview, Eva discusses several possible contributing factors, including travel, demanding schedules, immune-related health concerns, and receiving influenza and COVID-19 vaccinations on the same day.

    She explicitly acknowledges that she cannot identify a single cause of her decline.

    Her experience does not establish that vaccination caused her symptoms or that receiving both vaccines together is generally unsafe. Receiving recommended influenza and COVID-19 vaccines during the same visit is considered acceptable for most eligible people, with individual medical circumstances discussed with a healthcare professional.

    Eva's broader point is that complex illnesses can make it difficult to determine why symptoms worsen or improve.

    Turning Pain Into Purpose Through Parsons School of Design

    During her most difficult period, Eva began applying her graduate coursework to the challenges facing the Lyme disease community.

    Her academic program focused on strategic design and management, including human-centered problem-solving and community research.

    Rather than abandoning graduate school, she used her education to investigate how Lyme disease awareness could be improved.

    Eva and her collaborators interviewed more than 100 people connected to the Lyme disease community.

    These conversations helped identify common frustrations involving diagnosis, treatment, education, public awareness, and social support.

    Eva concluded that many organizations were already doing valuable work in specialized areas.

    However, she believed an important opportunity remained: reaching people who had never experienced Lyme disease and knew little about it.

    This realization became the foundation for LymeLnk.

    Why Eva Founded LymeLnk

    Eva explains that the Lyme disease community includes numerous organizations addressing different parts of a complicated healthcare and public health landscape.

    She highlights organizations such as:

    • ILADS, which provides education and professional development for healthcare practitioners
    • Center for Lyme Action, which focuses on legislative advocacy and public policy
    • Global Lyme Alliance, which supports research and education
    • Bay Area Lyme Foundation, which funds scientific research and advances awareness

    Eva believes these organizations provide important specialized services.

    Rather than duplicating their work, she wanted LymeLnk to complement it.

    Her organization focuses on expanding basic Lyme disease knowledge among people outside the established patient community.

    She argues that public education can help create a stronger foundation for prevention, earlier recognition, and greater compassion.

    The ABCs of Lyme Disease Awareness

    Eva describes LymeLnk's educational mission as helping people understand the ABCs of Lyme disease.

    These include basic knowledge about:

    Prevention: Understanding where ticks live, how exposure occurs, and how to reduce the risk of tick bites.

    Early detection: Recognizing potential signs and symptoms and knowing when to seek medical evaluation.

    Diagnosis: Understanding that Lyme disease testing has limitations and that clinical history matters.

    Treatment: Knowing that early evaluation and appropriate treatment are important.

    Eva believes people should not have to become seriously ill before learning these fundamentals.

    She wants Lyme disease awareness to become part of everyday health education.

    For practical prevention guidance, explore Tick Boot Camp's Tick Bite Blueprint.

    Why Patient Compassion Matters as Much as Awareness

    One of the most powerful moments in the interview comes when Eva describes feedback from Lyme disease patients participating in her research.

    Her team asked what successful public education would look like.

    Many patients did not begin by asking for complicated policy changes or scientific breakthroughs.

    They wanted something much simpler.

    They wanted to be able to tell someone they had Lyme disease and receive a response demonstrating basic understanding and compassion.

    Eva explains that patients often feel isolated because people around them do not understand the illness.

    This lack of understanding can make it harder to discuss symptoms, ask for accommodations, or feel supported.

    She believes that improving public literacy could help reduce stigma and strengthen community support.

    People living with Lyme disease deserve to be heard, believed, and treated with compassion.

    Storytelling as a Public Health Education Strategy

    Eva believes storytelling is one of the most effective ways to reach people who are unfamiliar with Lyme disease.

    Statistics and medical information are important, but personal experiences can make an unfamiliar issue feel relevant.

    Her approach combines patient stories with educational campaigns tailored to specific communities.

    Rather than delivering identical messages to everyone, LymeLnk aims to understand what different groups need to know.

    Potential audiences include:

    • Parents seeking to protect their children
    • Pet owners concerned about tick exposure
    • Outdoor enthusiasts and recreational groups
    • People working outdoors
    • Communities affected by changing tick habitats
    • Environmental and public health advocates

    Eva believes educational programs become more effective when they are developed with the people they are intended to serve.

    What Is Community-Centered Design?

    Eva introduces the concept of co-design, a method of developing programs collaboratively with the people who will use them.

    Instead of creating a campaign and asking a community to accept it, LymeLnk begins by learning about the community's experiences, concerns, and existing knowledge.

    The organization then works with local partners to create appropriate educational materials.

    Depending on the audience, these may include:

    • Public service announcements
    • Social media campaigns
    • Community workshops
    • Hands-on tick prevention demonstrations
    • Educational programs for children
    • Outdoor safety events
    • Storytelling initiatives featuring patient experiences

    Eva explains that the organization intends to test these approaches, measure their effectiveness, and improve them before expanding.

    Her goal is to develop a model that can be adapted across different communities.

    Why LymeLnk Launched in San Diego

    Although Eva developed the concept while attending Parsons in New York City, LymeLnk was incorporated in California.

    Eva explains that the organization established a presence in both San Diego and New York.

    These locations offer contrasting opportunities for Lyme disease education.

    New York has a long history of public awareness because Lyme disease is well established in the Northeast.

    San Diego, by comparison, offers opportunities to educate communities that may be less familiar with local tick-borne disease risks.

    Eva also grew up in California and had personal connections that could help support the organization's launch.

    She believes Southern California is an important place to address misconceptions about where tick-borne diseases occur.

    Lyme Disease and Tick Exposure in Southern California

    Eva challenges the misconception that Lyme disease and other tick-borne illnesses are exclusively East Coast problems.

    She explains that California has its own tick populations and documented tick-borne disease risks.

    People who spend time outdoors, travel to other regions, or interact with pets may encounter ticks.

    Eva believes a lack of awareness can contribute to missed opportunities for prevention and appropriate medical evaluation.

    Her organization aims to educate Southern California communities without creating unnecessary fear.

    The message is not that every tick carries Lyme disease.

    It is that people should understand their local risks and know how to protect themselves.

    The San Diego Launch Event: Bringing the Community Together

    Eva describes LymeLnk's launch event in San Diego's Little Italy neighborhood.

    Approximately 150 people attended.

    The event combined social connection with education and featured food options designed to accommodate different dietary needs.

    Eva shared her personal Lyme disease journey and explained the mission behind LymeLnk.

    The event also featured a discussion with:

    Dr. Liz Horn, principal investigator of the Lyme Disease Biobank, and Dr. Sharon Wampler of the San Diego Lyme Alliance.

    Together, they addressed misconceptions about tick-borne disease in California.

    Eva describes the event as an opportunity to connect patients, advocates, researchers, and community members in a welcoming environment.

    A Tick Encounter at a La Jolla Coffee Shop

    Eva shares a memorable story from the days leading up to LymeLnk's launch.

    While working at a coffee shop in La Jolla, she overheard someone discussing a tick found on her body.

    The woman explained that she had begun finding ticks regularly after walking her German Shepherd.

    She mentioned areas around San Diego, including Nautilus Street and Kate Sessions Park.

    Having lived in the area for many years, the woman was surprised by what she perceived as an increase in tick encounters.

    Eva introduced herself and explained her work with LymeLnk.

    The conversation became an unexpected opportunity for public education.

    Eva describes the encounter as a perfect example of why her organization exists.

    People may encounter ticks in places they do not associate with Lyme disease.

    A simple conversation can help someone recognize a risk and learn how to respond.

    Climate Change, Habitat Changes, and Tick Populations

    Eva and Rich discuss environmental factors that may influence tick distribution.

    Eva raises concerns about climate change, habitat fragmentation, and changing conditions that affect tick survival and activity.

    Scientific research has identified relationships between climate, habitat, wildlife populations, and the distribution of certain tick species.

    However, local changes in tick encounters can have multiple causes, and an individual observation cannot establish why a particular area has more ticks.

    Eva believes environmental education and Lyme disease awareness should increasingly work together.

    Her approach encourages communities to understand how human activity and ecological conditions influence public health.

    Measuring Whether Lyme Disease Education Works

    Eva explains that LymeLnk wants to measure the effectiveness of its educational programs rather than simply count event attendance.

    Following the San Diego launch, the organization surveyed participants.

    Eva reports a 76% increase in an education-related measure among attendees.

    The interview does not specify the survey methodology or how that percentage was calculated.

    Nevertheless, Eva sees the early feedback as encouraging.

    She believes that gathering information before and after educational programs can help identify which approaches are most effective.

    This emphasis on measurement reflects her background in strategic design.

    Bringing Tick Prevention Education Into Schools

    One of LymeLnk's first proposed initiatives involves partnering with an organization that provides after-school STEM programming to children in San Diego.

    Eva explains that the project was still in development at the time of the interview.

    The goal is to incorporate tick-borne disease education into existing science and outdoor learning programs.

    Potential topics include:

    • Tick biology and ecology
    • Wildlife and tick habitats
    • Outdoor safety
    • Tick checks and prevention
    • Understanding how infectious diseases spread
    • Recognizing when to seek help after a tick bite

    Eva believes teaching children about ticks through familiar science concepts can make prevention education engaging and practical.

    Rather than creating an entirely new curriculum, LymeLnk hopes to collaborate with established organizations and adapt existing educational resources.

    Scaling Lyme Disease Education One Community at a Time

    Eva explains that LymeLnk intends to begin with smaller educational programs and gradually expand.

    The initial focus is San Diego.

    The organization hopes to develop programs with local partners, evaluate the results, and refine its approach.

    If the early programs are successful, Eva envisions expanding to additional schools, outdoor organizations, and community groups.

    She mentions potential opportunities to engage outdoor enthusiasts and organizations such as the Sierra Club and REI communities.

    Her long-term goal is to increase Lyme disease literacy throughout San Diego County and eventually adapt the model for other regions.

    Why Collaboration Is Essential

    Eva emphasizes that LymeLnk does not want to reinvent educational resources that other organizations have already developed.

    Instead, she hopes to collaborate with researchers, advocacy groups, and community

17. Episode 614: Long COVID or Lyme Disease? The Hidden Infection Connection – Dr. Ben Sinclair | LIVE from ILADS

    29.10.202624 Min.Staffel 1 · Folge 614Als Nächstes

    Could some people diagnosed with long COVID also be dealing with Lyme disease, Bartonella, Babesia, or other infections that have gone undetected? In this LIVE from ILADS interview, Tick Boot Camp co-host Rich …

    Shownotes

    Could some people diagnosed with long COVID also be dealing with Lyme disease, Bartonella, Babesia, or other infections that have gone undetected?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Ben Sinclair, founder of Dr. Finlay's Private Practice in the United Kingdom, to explore the complex relationship between long COVID, Lyme disease, tick-borne infections, immune health, and chronic illness.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation examines how Dr. Sinclair's own debilitating illness following COVID-19 transformed his medical career and led him to investigate Lyme disease and associated infections.

    After becoming severely ill with COVID-19 while working as a medical director within the UK's National Health Service (NHS), Dr. Sinclair spent approximately three months largely confined to bed. His symptoms included profound fatigue, neurological difficulties, and a remarkable period during which he struggled to speak English but could communicate in German.

    Initially believing he was experiencing long COVID, he later pursued testing for Lyme disease, Bartonella, and other infections.

    His personal experience inspired a broader clinical focus on patients with persistent fatigue, neurological symptoms, and complex post-infectious illnesses.

    Rich and Dr. Sinclair discuss the three Bs—Borrelia, Bartonella, and Babesia—along with tick exposure in the UK, climate change, deer populations, neurological symptoms, nervous system regulation, nutrition, and the challenges of accessing Lyme disease care through the NHS.

    Throughout the conversation, Dr. Sinclair emphasizes the importance of looking at the whole patient rather than focusing exclusively on a single diagnosis.

    Meet Dr. Ben Sinclair: Founder of Dr. Finlay's Private Practice

    Dr. Ben Sinclair is a UK physician and founder of Dr. Finlay's Private Practice, a multidisciplinary private healthcare practice serving patients with complex chronic illnesses, including long COVID and suspected tick-borne infections.

    The practice operates primarily from London, near Oxford Street, with additional clinical services in Birmingham and other parts of the United Kingdom.

    Dr. Sinclair previously worked within the NHS, including serving as a regional medical director overseeing healthcare services across approximately 14 prisons.

    Alongside his NHS responsibilities, he developed an interest in preventive medicine, nutrition, health optimization, and integrative approaches to chronic illness.

    His practice now brings together healthcare professionals from several disciplines, including:

    • Physicians with interests in functional and integrative medicine
    • Clinicians experienced in evaluating Lyme disease
    • Psychologists
    • Nutritionists
    • Breathing specialists
    • Physiotherapy and rehabilitation professionals

    Dr. Sinclair explains that the practice offers in-person and virtual consultations, including support for patients who are housebound or bedbound.

    When a Doctor Becomes the Patient: Dr. Sinclair's Long COVID Journey

    Dr. Sinclair's interest in complex post-infectious illness became deeply personal after he contracted COVID-19.

    Before becoming ill, he describes himself as physically fit and health-conscious.

    He grew up on an organic farm, spent time in the military, and maintained an active lifestyle.

    Despite this background, his COVID-19 illness was followed by debilitating symptoms.

    He recalls spending approximately three months largely confined to bed.

    His symptoms included severe fatigue, cognitive difficulties, and problems with speech.

    One particularly unusual experience involved temporarily struggling to speak English.

    Although English is his native language, he found that he could communicate more easily in German, a language he had previously learned.

    His wife spoke German, allowing them to communicate during this period.

    Dr. Sinclair believes neurological inflammation may have contributed to these symptoms, although the interview does not establish the underlying neurological mechanism.

    His experience gave him a new understanding of what patients face when everyday activities become overwhelming.

    From Long COVID to a Lyme Disease Diagnosis

    Initially, Dr. Sinclair believed his symptoms were related to long COVID.

    As he began seeing patients with similar complaints, however, he noticed that some were not improving with the approaches his practice commonly used.

    Many reported persistent fatigue, neurological symptoms, and difficulty returning to their previous level of functioning.

    Dr. Sinclair began asking more detailed questions about potential tick exposure.

    To his surprise, some patients recalled previous tick bites or activities that placed them at increased risk of exposure.

    He also reconsidered his own history.

    Dr. Sinclair describes spending time outdoors during military service, traveling extensively, and experiencing tick bites during childhood, including one in a Canadian forest when he was approximately eight years old.

    He subsequently pursued testing for Lyme disease and other infections.

    After attending an ILADS conference in Europe, he reports receiving a Lyme disease diagnosis.

    He also describes laboratory findings involving Bartonella and Epstein-Barr virus.

    Dr. Sinclair believes these findings helped him better understand his illness and influenced his clinical approach.

    However, the presence of antibodies or other laboratory markers does not necessarily establish active infection or prove that an infection caused long COVID symptoms.

    Research continues to investigate how SARS-CoV-2 infection, immune responses, and other infectious conditions may contribute to prolonged illness.

    Can COVID-19 Trigger or Reactivate Other Infections?

    One of the central questions in the interview is whether COVID-19 can influence previously acquired infections.

    Dr. Sinclair discusses the possibility that immune changes following COVID-19 may contribute to the reactivation of certain pathogens or the emergence of symptoms associated with other illnesses.

    He specifically raises questions about:

    • Lyme disease and Borrelia
    • Bartonella
    • Babesia
    • Epstein-Barr virus (EBV)
    • Other possible contributors to post-infectious illness

    Some research has identified associations between long COVID and evidence of Epstein-Barr virus reactivation or altered immune responses.

    However, the hypothesis that COVID-19 routinely reactivates persistent Borrelia, Bartonella, or Babesia infections remains unproven.

    Dr. Sinclair describes these possibilities as part of his evolving clinical perspective.

    The conversation highlights the importance of investigating other potential diagnoses when patients experience persistent symptoms rather than automatically attributing every symptom to long COVID.

    The Three Bs: Borrelia, Bartonella, and Babesia

    Rich and Dr. Sinclair discuss three pathogen groups frequently mentioned in the Lyme disease community.

    Borrelia: The Bacteria Associated With Lyme Disease

    Borrelia burgdorferi and related bacteria cause Lyme disease.

    Infections can produce symptoms involving the skin, joints, nervous system, and cardiovascular system.

    Bartonella: A Group of Bacterial Infections

    Bartonella species can cause several different human diseases.

    Dr. Sinclair discusses Bartonella in relation to neurological symptoms and complex chronic illness.

    He also raises questions about possible exposure through fleas, lice, and other arthropods.

    Transmission pathways vary by Bartonella species, and some proposed routes remain uncertain.

    Babesia: A Tick-Borne Parasite

    Babesia parasites infect red blood cells and can cause babesiosis.

    Symptoms may include fever, chills, fatigue, sweating, and anemia.

    Severe disease can occur, particularly in people with certain underlying health conditions.

    Dr. Sinclair explains that he has become increasingly interested in identifying possible Babesia infections among patients with overlapping symptoms.

    Rich observes that more Tick Boot Camp guests have discussed diagnoses involving multiple pathogens in recent years.

    They consider whether this reflects greater awareness, changes in testing, increased exposure, or other factors.

    Importantly, not every Lyme disease patient has Bartonella or Babesia, and overlapping symptoms do not establish the presence of multiple infections.

    Why Tick-Borne Diseases May Be Increasing in the UK

    Dr. Sinclair discusses several environmental factors he believes may contribute to changing patterns of tick exposure in the United Kingdom.

    These include:

    • Climate change and milder winters
    • Changes in seasonal tick activity
    • Expanding or changing deer populations
    • Migratory birds transporting ticks
    • Greater awareness and reporting of tick-borne diseases
    • Changes in land use and human exposure to tick habitats

    He notes that his practice sees patients from areas associated with forests, deer populations, and known tick habitats.

    He also discusses the New Forest and Bournemouth area, where tick exposure is an established concern.

    Dr. Sinclair believes that environmental changes deserve more attention in public health planning.

    While climate and wildlife ecology can influence tick distribution, the specific contribution of each factor varies by location and requires careful research.

    Deer, Sheep, Migratory Birds, and Tick Exposure

    Rich asks Dr. Sinclair about the relationship between wildlife populations and tick-borne diseases.

    Dr. Sinclair describes observations from areas of England where deer populations have increased.

    He recalls growing up near Knole Park, a historic deer park, and describes changes in the surrounding environment following a major storm in 1987.

    He believes changes in deer movement and habitat may have influenced local tick exposure.

    The conversation also turns to sheep farming and Babesia.

    Dr. Sinclair notes that parts of southwestern England, including Cornwall, Devon, and Somerset, have substantial sheep populations.

    He discusses possible ecological relationships involving livestock, ticks, and Babesia species.

    These relationships are complex.

    Different Babesia species have different animal reservoirs and transmission cycles, and the presence of deer or sheep does not automatically establish the source of human infection.

    The discussion underscores the importance of understanding local ecology when investigating tick-borne disease risks.

    Why Tick Prevention Matters Beyond the Woods

    Dr. Sinclair and Rich emphasize that tick exposure is not limited to remote forests or wilderness areas.

    People can encounter ticks while gardening, walking in parks, visiting rural properties, or spending time in areas frequented by wildlife.

    Changing tick habitats make prevention education increasingly important.

    Practical precautions include checking for ticks after outdoor activities, using appropriate repellents, wearing protective clothing, and removing attached ticks promptly.

    For step-by-step prevention and tick bite guidance, explore Tick Boot Camp's Tick Bite Blueprint.

    A Multidisciplinary Approach to Complex Chronic Illness

    Dr. Sinclair explains that his private practice was designed to bring different healthcare disciplines together.

    He believes that patients with complex illnesses may benefit from coordinated care addressing multiple aspects of health.

    His team includes physicians, psychologists, nutrition professionals, breathing specialists, and rehabilitation providers.

    The practice considers:

    Medical evaluation: Investigating possible infections, post-infectious conditions, and other causes of symptoms.

    Nutrition: Supporting adequate dietary intake and addressing relevant nutritional concerns.

    Sleep: Identifying sleep disturbances and improving sleep routines where possible.

    Psychological support: Helping patients cope with medical trauma, uncertainty, and the emotional effects of prolonged illness.

    Breathing and rehabilitation: Addressing breathing-pattern difficulties, autonomic symptoms, and functional limitations.

    Dr. Sinclair emphasizes that patients should not be reduced to a single symptom or laboratory result.

    His approach reflects a broader philosophy of individualized, multidisciplinary care.

    Medical Trauma, Stress, and the Nervous System

    Rich and Dr. Sinclair discuss the psychological burden of living with an illness that is difficult to diagnose or treat.

    Dr. Sinclair explains that his practice includes psychologists because patients may experience significant emotional distress after prolonged illness, repeated medical appointments, and feeling dismissed by healthcare professionals.

    He also discusses how chronic stress, poor sleep, and autonomic nervous system disturbances can influence overall well-being.

    The conversation recognizes that psychological support may be valuable even when a patient's primary illness is physical.

    Medical trauma and emotional distress do not mean symptoms are imaginary or that patients are responsible for their illness.

    Supporting mental health can be an important part of comprehensive care without replacing appropriate medical evaluation or treatment.

    For a related conversation, listen to Tick Boot Camp's interview with Cathleen King about Primal Trust and nervous system regulation.

    Breathwork, Dysautonomia, and Long COVID Recovery

    Dr. Sinclair describes becoming interested in breathwork during his own recovery.

    While largely confined to bed, he listened to podcasts discussing breathing techniques, including approaches associated with Wim Hof.

    He subsequently incorporated breathing support into his practice.

    His team works with patients experiencing breathing-pattern difficulties and certain autonomic symptoms.

    He mentions approaches such as:

    • Box breathing
    • Slow, paced breathing
    • Concordant breathing
    • Individualized breathing exercises

    Dr. Sinclair emphasizes that more intense methods, including Wim Hof-style breathing, are not appropriate for everyone.

    This distinction is particularly important for people experiencing dysautonomia, post-exertional symptom exacerbation, dizziness, or other complex symptoms.

    Breathing exercises may help some patients manage stress or breathing-pattern difficulties, but they are not established cures for Lyme disease or long COVID.

    Patients should seek individualized guidance and avoid techniques that provoke significant symptoms.

    Nutrition, Sleep, and Immune Health

    Dr. Sinclair describes several lifestyle strategies he incorporated during his own recovery.

    These included paying closer attention to nutrition, sleep, stress management, and daily routines.

    He discusses:

    • A diet emphasizing fiber and nutrient-rich foods
    • Adequate sleep and consistent sleep patterns
    • Natural daylight exposure to support circadian rhythms
    • Meditation and relaxation
    • Appropriate physical activity within individual limitations
    • Breathwork and stress management

    He also mentions experimenting with cold-water immersion.

    However, cold-water immersion can pose risks, especially for people with cardiovascular problems or autonomic dysfunction, and it is not an established treatment for Lyme disease or long COVID.

    Dr. Sinclair believes that supporting general health can complement medical treatment.

    Lifestyle measures may contribute to overall well-being, but they should not be presented as substitutes for evidence-based treatment of active infections or other diagnosed conditions.

    Treating Housebound and Bedbound Patients

    One of the challenges Dr. Sinclair's practice addresses is access to care for people who cannot easily travel.

    He explains that some patients are housebound or bedbound because of severe fatigue, neurological symptoms, or other functional limitations.

    His team offers virtual consultations and, where available, home visits.

    They may also work with family members and caregivers to coordinate care.

    Dr. Sinclair says the practice serves patients throughout the UK and internationally, subject to professional and insurance restrictions.

    At the time of the interview, he explains that the practice could not provide services to patients in the United States or Canada because of insurance limitations.

    Children, Long COVID, and Complex Illness

    Dr. Sinclair also discusses the growing number of children seen by his practice.

    He explains that parents receiving care sometimes sought help for children experiencing persistent symptoms after COVID-19.

    Drawing on his background in family medicine, he expanded the practice's work with pediatric patients.

    He describes an interest in understanding whether some children with prolonged symptoms may have other medical conditions requiring investigation.

    The conversation includes his clinical observations about possible infections such as Bartonella.

    However, his estimates regarding the proportion of long COVID patients with co-infections are preliminary impressions from his practice, not established population-level findings.

    Pediatric patients with persistent symptoms require careful, individualized assessment, and proposed infectious explanations should be evaluated using appropriate clinical evidence.

    Lyme Disease Recognition and Treatment in the United Kingdom

    Rich asks Dr. Sinclair whether Lyme disease awareness and medical support in the UK are improving.

    Dr. Sinclair acknowledges growing recognition of tick-borne disease risks.

    He also expresses concern that UK clinical guidance and healthcare systems have not evolved as quickly as he would like.

    He discusses challenges involving:

    • Access to specialized diagnostic testing
    • Limited awareness of complex presentations
    • Differences in clinical perspectives
    • Financial constraints within the NHS
    • The pace of research and guideline development
    • Professional scrutiny surrounding controversial treatment approaches

    Dr. Sinclair believes international conferences such as ILADS provide opportunities for clinicians to exchange research findings and learn from colleagues.

    His comments reflect his personal assessment of the UK healthcare environment.

    Established clinical guidance, emerging research, and contested treatment approaches should be distinguished when evaluating care options.

    Why Dr. Sinclair Attends ILADS

    Dr. Sinclair explains that ILADS provides an opportunity to connect with p

18. Episode 613: New Lyme Disease Test Detects 3 Infections at Once – Dr. Jennifer Miller | LIVE from ILADS

    28.10.202625 Min.Staffel 1 · Folge 613Als Nächstes

    What if one blood test could detect Lyme disease, Bartonella, and Babesia at the same time—without relying on the body's antibody response? In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits …

    Shownotes

    What if one blood test could detect Lyme disease, Bartonella, and Babesia at the same time—without relying on the body's antibody response?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Jennifer Miller, PhD, of Galaxy Diagnostics to discuss a new generation of direct detection tests designed to help doctors identify Lyme disease and other difficult-to-detect vector-borne infections.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why conventional Lyme disease testing can miss infections, how Borrelia may interfere with antibody development, and how digital PCR technology can search for Borrelia, Bartonella, and Babesia DNA in a single blood sample.

    Dr. Miller explains how Galaxy Diagnostics developed a digital PCR assay that divides a blood sample into approximately 26,000 individual reactions, increasing the analytical ability to detect small amounts of pathogen DNA.

    She also announces that the assay became commercially available in March 2025 and explains how patients can work with their healthcare providers to access testing.

    For patients who have experienced years of diagnostic uncertainty, this conversation offers an encouraging look at emerging technologies that could help improve the diagnosis of Lyme disease and associated infections.

    Meet Dr. Jennifer Miller, PhD

    Dr. Jennifer Miller, PhD is Vice President of Clinical and Scientific Operations at Galaxy Diagnostics, a laboratory specializing in diagnostic testing for difficult-to-detect vector-borne infections.

    Her work focuses on developing and validating diagnostic technologies for pathogens such as Borrelia, Bartonella, and Babesia.

    Dr. Miller has extensive experience researching vector-borne pathogens and translating laboratory discoveries into clinical diagnostic tools.

    During the interview, Rich mentions a previous conversation with Galaxy Diagnostics CEO Nicole Bell, who helped introduce him to the company's work.

    Dr. Miller discusses returning to Galaxy Diagnostics and working with its scientific team to develop more sensitive direct detection methods.

    Their shared goal is to provide clinicians with better diagnostic tools while helping patients avoid unnecessary delays, repeated testing, and prolonged uncertainty.

    Why Lyme Disease Testing Can Miss Infections

    Rich begins by addressing one of the most frustrating challenges facing the Lyme disease community: patients can experience significant symptoms while repeatedly receiving negative laboratory results.

    He asks Dr. Miller to explain why Lyme disease testing remains difficult and what researchers are doing to improve it.

    Dr. Miller begins by describing two fundamentally different approaches to infectious disease testing.

    Indirect testing looks for the body's immune response to a pathogen.

    Direct testing searches for material associated with the pathogen itself, such as its proteins or genetic material.

    Understanding the difference is important because these tests answer different questions.

    Indirect Lyme Disease Testing: Looking for Antibodies

    Most commonly used Lyme disease blood tests are indirect tests.

    They look for antibodies produced by the immune system after exposure to Borrelia, the bacteria responsible for Lyme disease.

    Dr. Miller uses a simple analogy to explain the limitations of antibody testing.

    An antibody is like a sign left behind by someone who visited a location.

    The sign says:

    “I was here.”

    But it doesn't tell you whether that visitor is still present or whether they left months or years earlier.

    Similarly, Lyme disease antibodies may remain detectable after an infection has been treated.

    A positive antibody test therefore does not necessarily establish that a person currently has an active infection.

    Conversely, someone with a recent infection may not yet have produced enough detectable antibodies for a test to become positive.

    This creates a diagnostic window during which early Lyme disease can be missed.

    For more information about testing limitations, explore Tick Boot Camp's Lyme disease testing resources.

    Sensitivity, Specificity, and Cross-Reactivity

    Dr. Miller explains that diagnostic tests are evaluated using two important measurements.

    Sensitivity describes how effectively a test identifies people who have a particular condition.

    A test with inadequate sensitivity may produce false-negative results.

    Specificity describes how effectively a test identifies people who do not have that condition.

    A test with inadequate specificity may produce false-positive results.

    She also discusses cross-reactivity, which occurs when an antibody recognizes a target that resembles something other than the intended pathogen.

    Dr. Miller compares antibody testing patterns to a barcode.

    Different parts of the barcode represent responses to different proteins.

    However, some proteins may be shared across related organisms or resemble proteins from other infectious agents.

    This can complicate test interpretation.

    She emphasizes that both the biological behavior of Borrelia and the design of the assay influence how well a test performs.

    IgM vs. IgG: Understanding the Immune Response

    Rich asks Dr. Miller to explain why different antibody classes matter when diagnosing Lyme disease.

    IgM Antibodies

    IgM antibodies are commonly associated with the early immune response.

    Dr. Miller describes IgM as a broad responder that can recognize certain targets before the immune system develops a more refined response.

    This broad recognition can be useful during early infection but can also contribute to cross-reactivity.

    IgG Antibodies

    IgG antibodies commonly develop as the immune response matures.

    Through biological processes known as affinity maturation and class switching, the immune system can produce antibodies that recognize specific targets more effectively.

    Dr. Miller explains that the timing and quality of these responses can affect the performance of antibody-based diagnostic tests.

    However, neither IgM nor IgG results alone can reliably determine whether Borrelia remains actively present after treatment.

    How Borrelia May Interfere With Antibody Development

    One of the most scientifically interesting parts of the conversation explores how Borrelia may influence the immune system.

    Dr. Miller discusses research suggesting that Borrelia infection can disrupt processes involving B cells, the immune cells responsible for producing antibodies.

    She explains that an effective antibody response involves several steps.

    First, the immune system recognizes a pathogen.

    Next, B cells begin producing antibodies.

    Over time, the immune response can become more refined, generating antibodies that bind more effectively to their targets.

    Dr. Miller describes how Borrelia may interfere with these processes.

    She uses an analogy involving rooms and doors.

    Imagine that a B cell needs access to different rooms to develop and improve its antibodies.

    In her analogy, Borrelia interferes with access to those rooms, disrupting the processes needed for antibody maturation.

    This may help explain why some immune responses to Borrelia develop differently than expected.

    Dr. Miller also discusses how these effects could influence the transition from IgM to IgG antibodies.

    These mechanisms remain an active area of scientific investigation, and experimental findings do not mean that every patient with Lyme disease experiences the same immune dysfunction.

    Direct Detection: Looking for the Pathogen Itself

    Rich then asks Dr. Miller to explain the alternative to antibody-based testing.

    Rather than measuring the immune response, direct detection methods look for evidence of the pathogen.

    Dr. Miller describes two approaches being developed or offered by Galaxy Diagnostics.

    Urine Antigen Testing

    An antigen is a molecule associated with a pathogen, often a protein.

    Dr. Miller explains that Galaxy has developed testing designed to detect certain Borrelia antigens shed into urine.

    The goal is to identify pathogen-associated material without relying on antibody production.

    PCR Testing

    Polymerase chain reaction, or PCR, detects specific sequences of genetic material.

    For Lyme disease, PCR testing attempts to identify Borrelia DNA.

    However, Borrelia can be difficult to detect in blood because the organism may circulate at very low concentrations.

    Dr. Miller explains that Galaxy's newer approach uses digital PCR, a technology designed to improve the detection of small amounts of genetic material.

    Direct detection has important limitations as well. A negative result does not necessarily exclude infection, and detecting DNA does not automatically establish that live organisms are present.

    Digital PCR: Finding the Needle in 26,000 Haystacks

    One of the interview's most memorable explanations involves searching for a needle in a haystack.

    Rich recalls how Nicole Bell described Galaxy's digital PCR technology.

    Traditional PCR can be compared to searching for a tiny needle in a large pile of hay.

    Digital PCR divides the sample into thousands of smaller sections, making it easier to identify a target when very little genetic material is present.

    Dr. Miller explains that Galaxy's assay partitions a sample into approximately 26,000 individual reactions.

    Each partition is analyzed for the presence or absence of specific pathogen DNA.

    Rather than analyzing everything in one reaction, the technology evaluates thousands of smaller reactions.

    This can improve analytical sensitivity under appropriate conditions.

    However, the technology cannot detect pathogen DNA that is absent from the collected sample or present below the assay's detection threshold.

    One Blood Test for Borrelia, Bartonella, and Babesia

    The biggest announcement in the interview concerns Galaxy's ability to investigate three major pathogen groups using one blood sample.

    Borrelia: Lyme Disease and Relapsing Fever

    Borrelia includes bacteria responsible for Lyme disease and certain forms of relapsing fever.

    Dr. Miller explains that Galaxy's assay is designed to recognize genetic sequences shared across different Borrelia organisms.

    This includes targets associated with Lyme disease Borrelia and relapsing fever Borrelia.

    Bartonella: A Difficult-to-Detect Bacterial Infection

    Bartonella is a group of bacteria associated with several human illnesses.

    Different Bartonella species can cause different clinical manifestations, including cat-scratch disease and certain bloodstream infections.

    Dr. Miller discusses how genus-level genetic targets may help identify members of the Bartonella group without requiring a completely separate assay for every species.

    Babesia: A Tick-Borne Parasite

    Babesia is a group of parasites that infect red blood cells.

    Babesiosis can cause fever, chills, fatigue, anemia, and potentially serious complications, particularly in vulnerable patients.

    Dr. Miller explains that Galaxy's assay can investigate Babesia genetic material alongside Borrelia and Bartonella.

    The ability to test for all three pathogen groups in one sample may provide additional information when clinicians suspect overlapping infections.

    It does not mean every person with Lyme disease has all three infections or that every patient requires testing for all three.

    What Is Genus-Level Detection?

    Rich asks Dr. Miller whether Galaxy's assay can detect different species and strains within each pathogen group.

    Dr. Miller explains that the test uses genetic targets shared by members of a particular genus.

    She compares this to recognizing a family rather than identifying each individual cousin.

    For example, different Bartonella species may share genetic sequences that allow them to be recognized as belonging to the same broader group.

    By targeting those shared sequences, an assay can potentially detect multiple related organisms.

    This approach may broaden detection while reducing the need for separate targets for every species.

    However, genus-level detection does not necessarily identify the exact species or strain responsible for an infection.

    Actual coverage depends on the assay's design and validation.

    Why Testing for Multiple Infections Matters

    Rich discusses how Tick Boot Camp interviews have increasingly featured patients reporting diagnoses involving multiple tick-borne or vector-borne infections.

    He explains that earlier conversations often focused primarily on Borrelia.

    More recently, patients have frequently discussed Bartonella and Babesia alongside Lyme disease.

    Dr. Miller agrees that clinicians sometimes need to investigate more than one possible infection because symptoms can overlap.

    For example, fatigue, headaches, and other nonspecific symptoms may occur with several different illnesses.

    Testing for multiple pathogens may help clinicians narrow their differential diagnosis when a patient's history supports that evaluation.

    She also emphasizes the financial consequences of repeatedly visiting providers and undergoing separate tests.

    Better diagnostic tools could potentially help streamline this process.

    However, the prevalence of co-infections varies by geographic region, exposure history, and pathogen. The experiences of podcast guests should not be interpreted as evidence that most Lyme disease patients have all three infections.

    Can Direct Testing Distinguish a Past Infection From a New Infection?

    Rich shares his history of numerous tick bites over several decades.

    He explains that one of his concerns about antibody testing is its inability to reliably determine when an infection occurred.

    Dr. Miller agrees that prior infections can complicate interpretation because antibodies may persist long after the original exposure.

    She discusses how direct detection may provide different information by searching for pathogen-associated genetic material rather than antibodies.

    This could be especially useful when evaluating someone with a history of previous tick-borne infections and new symptoms.

    However, a positive PCR result does not always distinguish live infection from residual DNA, and a negative result cannot exclude every active infection.

    Clinical history, examination findings, and other testing remain important.

    Galaxy's Digital PCR Test Became Available in March 2025

    Rich asks when patients will be able to access the new technology.

    Dr. Miller shares that Galaxy's digital PCR assay had already completed laboratory validation and became commercially available in March 2025.

    She explains that the laboratory operates under clinical laboratory quality requirements and that the scientific team had worked extensively to validate the assay.

    She expresses excitement about making the technology available to healthcare professionals investigating difficult-to-detect infections.

    Commercial availability and laboratory validation are important milestones, but they do not establish that the assay can detect every infection or that it outperforms all other diagnostic methods in every clinical situation.

    Independent clinical performance data remain important when evaluating new testing technologies.

    Can Patients Order Galaxy's Digital PCR Test Directly?

    Rich asks a practical question that many listeners will have.

    Can patients order the test themselves, or does a healthcare professional need to request it?

    Dr. Miller explains that, at the time of the interview, the test required an order from a practitioner.

    Galaxy Diagnostics provides educational resources that patients can share with their healthcare professionals.

    These include information about available tests, scientific literature, frequently asked questions, and provider ordering procedures.

    Patients interested in learning more can visit Galaxy Diagnostics.

    Current test availability, ordering requirements, and pricing should be confirmed directly with the laboratory.

    Could Better Lyme Disease Testing Reduce Healthcare Costs?

    Dr. Miller discusses the financial and emotional burden of diagnostic uncertainty.

    Patients may spend years visiting multiple healthcare professionals, undergoing repeated tests, and searching for explanations.

    Each additional appointment can create expenses, delays, and frustration.

    She hopes that improved direct detection technologies will help clinicians make more informed decisions sooner.

    Rich emphasizes the importance of making diagnostic testing more accessible and efficient for patients.

    The conversation reflects a shared goal: reducing the time people spend searching for answers and helping them access appropriate care.

    Whether any specific new test reduces costs or improves long-term patient outcomes requires further study.

    The Future of Lyme Disease Diagnostics

    Dr. Miller describes Galaxy's work as part of an effort to develop the next generation of direct detection tools.

    She believes technologies such as digital PCR may help address limitations associated with antibody-based testing.

    The conversation also highlights the importance of scientific collaboration, continued validation, and patient-centered research.

    Rich expresses hope that accurate and affordable testing will eventually become more accessible to people living in regions where tick-borne diseases are common.

    For patients who have experienced diagnostic uncertainty, the development of new testing approaches offers reasons for cautious optimism.

    Key Takeaways

    • Conventional Lyme disease testing has limitations. Antibody tests may miss early infections and cannot reliably distinguish past exposure from current infection.
    • Direct and indirect tests answer different questions. Indirect tests measure immune responses, while direct tests search for pathogen-associated material.
    • Borrelia may affect antibody development. Dr. Miller discusses research into how infection can interfere with B-cell function and antibody maturation.
    • Digital PCR uses thousands of reactions. Galaxy's technology partitions a sample into approximately 26,000 individual reactions.
    • One sample can be tested for three pathogen groups. The assay targets Borrelia, Bartonella, and Babesia.
    • Genus-level detection may identify multiple related species. The approach targets shared genetic sequences rather than every strain individually.
    • Relapsing fever Borrelia is also part of the discussion. Galaxy designed its assay to investigate a bro

19. Episode 612: Lyme Disease Nearly Took Her Life. Now She's Funding Treatment – Darlene O'Connor | LIVE from ILADS

    27.10.202617 Min.Staffel 1 · Folge 612Als Nächstes

    After seeing approximately 22 medical practitioners, undergoing more than a dozen procedures, and facing a possible ALS diagnosis, Darlene DeBauer O'Connor finally received a Lyme disease diagnosis that changed …

    Shownotes

    After seeing approximately 22 medical practitioners, undergoing more than a dozen procedures, and facing a possible ALS diagnosis, Darlene DeBauer O'Connor finally received a Lyme disease diagnosis that changed her life. Today, she's helping other families overcome one of the biggest barriers to healing: the cost of care.

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Darlene DeBauer O'Connor, Executive Director of the Northeast Lyme and Associated Diseases (NELAD) Resource Foundation, to discuss her family's experience with Lyme disease, the devastating consequences of delayed diagnosis, and a new nonprofit providing financial assistance for testing and treatment.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores Lyme disease misdiagnosis, ALS-like symptoms, neurological complications, family-wide tick-borne illness, treatment costs, patient advocacy, and financial grants of up to $3,000 per person annually.

    Darlene shares how her diagnosis on October 16, 2013, led to other family members seeking answers, why her brother's death strengthened her commitment to advocacy, and how years of educational outreach revealed a critical problem: Knowing where to find help means little when patients cannot afford to access it.

    Her story is one of resilience, family, community, and turning personal suffering into practical support for others.

    From Possible ALS to a Lyme Disease Diagnosis

    In her 40s, Darlene was working as a public school teacher in Massachusetts when she began experiencing increasingly debilitating symptoms.

    What started as fatigue and headaches progressed into a frightening combination of physical, neurological, and psychological problems.

    Her symptoms included:

    • Extreme fatigue and difficulty getting out of bed
    • Severe headaches and recurring fevers
    • Migrating pain throughout her body
    • Muscle weakness, tripping, and falling
    • Difficulty walking
    • Bladder control problems
    • Neurological and psychological symptoms

    Darlene consulted approximately 22 medical practitioners across multiple specialties, including cardiology, neurology, and infectious disease.

    She underwent more than a dozen procedures while searching for an explanation.

    Eventually, clinicians began considering amyotrophic lateral sclerosis (ALS), a progressive neurological disease.

    The possibility was devastating.

    Darlene remembers becoming increasingly frightened as her condition worsened and her independence disappeared.

    Ten Negative Lyme Tests Before Getting Answers

    Despite living in a region where Lyme disease is common, Darlene reports receiving approximately 10 negative Lyme disease tests during her diagnostic journey.

    On October 16, 2013, her sister brought her to a practitioner in Wilton, Connecticut.

    After reviewing her symptoms and medical history, the practitioner diagnosed her clinically with Lyme disease and investigated possible additional infections.

    Darlene describes that appointment as the turning point in her life.

    She calls the anniversary her personal “D-Day,” meaning Diagnosis Day.

    For the first time, she felt she had an explanation for the illness that had disrupted her life.

    She began treatment and gradually experienced improvements, although she also recalls difficult reactions during the process.

    Her experience highlights the importance of interpreting Lyme disease testing alongside clinical findings and exposure history.

    Antibody tests can produce false-negative results, particularly early in infection. However, repeated negative results later in an illness require careful consideration of other possible diagnoses as well.

    For more information, explore Tick Boot Camp's Lyme disease testing resources.

    When One Diagnosis Leads an Entire Family to Seek Answers

    Darlene's diagnosis had consequences far beyond her own health.

    She is the youngest of five children in a close-knit Italian-American family.

    After learning more about Lyme disease and associated infections, she began recognizing similarities between her experiences and symptoms reported by siblings, nieces, nephews, and other relatives.

    Family conversations increasingly focused on tick exposure, unexplained symptoms, and the possibility of tick-borne illness.

    Darlene describes a cascade of additional diagnoses among family members.

    She explains that relatives were evaluated by different healthcare professionals rather than a single practitioner.

    Over time, she reports that most affected family members experienced meaningful improvement.

    The family's experiences strengthened her belief that education and early recognition are essential.

    Importantly, similar symptoms within a family do not necessarily establish a shared infection. Tick exposure, other medical conditions, and individual diagnostic findings must be evaluated separately.

    Losing Her Brother and the Questions Surrounding Lewy Body Dementia

    One of the most emotional moments in the interview comes when Darlene discusses the death of her brother.

    She believes complications associated with vector-borne illness contributed to his neurological decline and eventual diagnosis of Lewy body dementia.

    She describes a period during which he appeared to improve, followed by worsening symptoms and rapid deterioration.

    His death remains a profound loss for the family.

    Darlene's experience raises questions about the relationship between infectious diseases, neurological inflammation, and neurodegenerative conditions.

    However, a causal relationship between Lyme disease or other tick-borne infections and Lewy body dementia has not been established.

    Her brother's story reflects the family's understanding of his illness and the grief that continues to motivate their advocacy.

    Why Tick Prevention Education Matters

    Before becoming ill, Darlene believed she understood tick prevention.

    She had worked as an education coordinator for Mass Audubon and was familiar with outdoor safety.

    However, she admits that her understanding of Lyme disease was limited.

    She believed avoiding heavily wooded areas and removing visible ticks would provide adequate protection.

    Her perspective changed dramatically after her diagnosis.

    Darlene also recalls a tick bite involving her son at a Massachusetts hospital and wishing the tick had been saved for identification.

    Rich and Darlene discuss the importance of recognizing that tick exposure can occur in ordinary environments, including residential yards, gardens, and recreational spaces.

    They also reflect on how little Lyme disease education they received during their school years in the Northeast.

    Their conversation emphasizes that prevention education should begin long before someone becomes ill.

    For practical guidance on tick checks, tick removal, and what to do after a bite, visit Tick Boot Camp's Tick Bite Blueprint.

    Turning Lyme Disease Into a Mission

    As Darlene began recovering, she and her sister became involved with Central Mass Lyme, a Massachusetts organization focused on education and awareness.

    Darlene served on its conference committee, while her sister participated on the organization's board.

    Together with other advocates, they helped organize four educational conferences.

    One conference attracted approximately 500 attendees.

    Speakers included prominent Lyme disease clinicians and researchers such as:

    • Dr. Stephen Phillips
    • Dr. Daniel Cameron
    • Dr. Neil Spector
    • Dr. Bill Rawls

    These events connected patients, caregivers, healthcare professionals, authors, and advocates.

    Darlene also began speaking publicly about her family's experience.

    Her presentations resonated with people who had spent years searching for answers.

    But as more patients approached her after speaking engagements, she noticed a recurring problem.

    People weren't simply asking what Lyme disease was.

    They wanted to know how to find a knowledgeable practitioner and how to pay for testing and treatment.

    The Missing Piece: Financial Assistance for Lyme Disease Patients

    Darlene and her sister realized that education alone could not solve the challenges facing many families.

    Even when patients identified a healthcare professional they wanted to see, financial barriers often prevented them from obtaining care.

    Some practitioners had long waiting lists.

    Others required out-of-pocket payments that families could not afford.

    Testing, medical appointments, medications, and supportive therapies could create substantial financial strain.

    Darlene and her sister decided to establish an organization that would combine education and emotional support with direct financial assistance.

    That decision led to the creation of the Northeast Lyme and Associated Diseases Resource Foundation, commonly known as NELAD.

    What Is the NELAD Resource Foundation?

    The NELAD Resource Foundation is a nonprofit organization focused on helping people affected by Lyme disease and associated illnesses.

    Its mission includes three interconnected areas:

    Education and awareness: Helping patients, families, and communities better understand Lyme disease and associated conditions.

    Emotional support: Connecting individuals and families through support groups and shared experiences.

    Financial assistance: Providing grants to help eligible patients access testing and treatment.

    Although NELAD is based in New England, particularly Massachusetts and Rhode Island, Darlene explains that its assistance is not limited to those states.

    At the time of the interview, the foundation had already provided funding to recipients in 10 additional states, including Texas.

    Darlene emphasizes that the organization focuses on families and does not impose an age limit on applicants.

    NELAD Grants: Up to $3,000 Per Person Per Year

    One of the most valuable parts of the interview is Darlene's explanation of NELAD's financial assistance program.

    At the time of recording, the foundation offered grants of up to $3,000 per person, per year, subject to eligibility, available funding, and the organization's approval process.

    Because the program supports individual family members, more than one person within a household may potentially qualify.

    Darlene also explains that previously funded applicants may reapply in subsequent years.

    The grants are intended to reduce financial barriers to Lyme disease-related testing and treatment.

    Darlene describes assistance for conventional medical care as well as certain integrative services when supported by documentation from a practitioner.

    The foundation evaluates applications and determines funding based on its own criteria.

    Grant availability, covered services, and funding limits may change. Applicants should confirm current requirements directly with NELAD.

    How to Apply for NELAD Financial Assistance

    Darlene explains that the foundation deliberately designed its application process to be manageable for people dealing with significant illness.

    Applicants can begin through the organization's website.

    The process she describes includes:

    1. Complete a preliminary application. Applicants can submit the form online or print and mail it.
    2. Provide basic information. The initial form allows the foundation to review the request before collecting extensive documentation.
    3. Indicate willingness to provide supporting records. These may include tax documents, disability information, or a practitioner's recommendation.
    4. Wait for application review. The foundation evaluates requests and determines eligibility and available assistance.

    Darlene emphasizes that patients do not need to gather every supporting document before beginning the preliminary process.

    This approach is intended to make applying less overwhelming for people already managing difficult health circumstances.

    Visit NELAD.org to learn about financial assistance and apply.

    Donated Lyme Disease Testing and Additional Support

    Darlene also announces that a specialty laboratory, identified in the transcript as IGeneX, committed to donating 10 Lyme disease tests annually to support the foundation's work.

    She describes this partnership as an important opportunity to help patients who cannot afford certain diagnostic services.

    The interview also discusses NELAD's willingness to consider different treatment-related expenses when supported by a healthcare practitioner's recommendation.

    These may include medications and certain complementary approaches.

    However, the foundation's willingness to fund a service should not be interpreted as evidence that the service is medically effective.

    Patients should discuss the risks, benefits, and supporting evidence for any proposed treatment with qualified healthcare professionals.

    Why Lyme Disease Advocacy Requires Collaboration

    Darlene repeatedly emphasizes the importance of organizations working together.

    Although NELAD developed from her experiences with Central Mass Lyme, she continues to value that relationship.

    She believes the challenges facing the Lyme disease community are too significant for any one organization to address alone.

    Education, patient support, research, financial assistance, and public policy advocacy all serve important purposes.

    Rich agrees and invites Darlene and her sister to return for a longer Tick Boot Camp interview.

    He wants listeners to learn more about the family's experiences and the resources available through NELAD.

    Their conversation demonstrates how different advocacy organizations can complement one another while helping patients find the support they need.

    Key Takeaways

    • Lyme disease can be difficult to diagnose. Darlene saw approximately 22 practitioners and received numerous negative tests before her diagnosis.
    • Severe symptoms deserve thorough evaluation. Her illness included neurological problems, weakness, difficulty walking, and symptoms that raised concerns about ALS.
    • A diagnosis can affect an entire family. Darlene's experience prompted relatives to investigate their own unexplained symptoms.
    • Loss can inspire advocacy. Her brother's death strengthened her commitment to helping others.
    • Education is essential. Her work with Central Mass Lyme helped bring conferences and patient resources to the community.
    • Financial barriers can prevent access to care. Darlene and her sister founded NELAD after recognizing that many patients could not afford testing and treatment.
    • NELAD provides direct financial assistance. At the time of the interview, grants were available for up to $3,000 per person annually.
    • Families are a priority. The foundation considers applicants of all ages and may assist multiple members of a household.
    • Patients can apply online or by mail. NELAD designed its preliminary application to minimize the initial paperwork burden.
    • Collaboration strengthens advocacy. Patient organizations can work together to expand education, financial assistance, and community support.

    About This LIVE from ILADS Interview

    Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Darlene DeBauer O'Connor, Executive Director of the Northeast Lyme and Associated Diseases Resource Foundation.

    Rich and Darlene discuss her 2013 Lyme disease diagnosis, her family's experiences with tick-borne illnesses, the emotional impact of losing her brother, and the creation of a nonprofit dedicated to helping patients access care.

    The interview provides practical information about NELAD's grant program and its efforts to support families facing the financial burden of Lyme disease.

    Explore additional patient stories, advocacy organizations, and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.

20. Episode 611: Why Lyme Disease Tests Miss Patients – Dr. Liz Horn on Breakthrough Research | LIVE from ILADS

    26.10.202622 Min.Staffel 1 · Folge 611Als Nächstes

    What if the biggest obstacle to diagnosing Lyme disease isn't a lack of symptoms—but the limitations of the tests doctors rely on? In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with …

    Shownotes

    What if the biggest obstacle to diagnosing Lyme disease isn't a lack of symptoms—but the limitations of the tests doctors rely on?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Liz Horn, PhD, Principal Investigator of the Lyme Disease Biobank, a research program of the Bay Area Lyme Foundation, to explore why Lyme disease testing remains challenging and how new diagnostic technologies could change the future of patient care.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation covers early Lyme disease testing, antibody detection, FDA-cleared diagnostics, persistent symptoms after treatment, tissue donation, and the research needed to better understand Borrelia and other tick-borne pathogens.

    Dr. Horn explains how researchers are using donated blood, urine, and human tissue samples to develop more accurate tests, investigate persistent symptoms, and study what tick-borne pathogens may be doing inside the body.

    She also shares encouraging developments involving IGeneX, emerging multiplex antibody tests, and a growing research network that gives patients meaningful opportunities to contribute to scientific progress.

    Her message is hopeful: Better Lyme disease diagnostics are possible, and patients can play an important role in making them a reality.

    Meet Dr. Liz Horn, PhD

    Dr. Liz Horn is the Principal Investigator of the Lyme Disease Biobank, a research initiative of the Bay Area Lyme Foundation.

    She began working on the biobank in 2013, with biological sample collection beginning in 2014.

    The program was created to address a major obstacle in Lyme disease research: scientists often lack access to well-characterized patient samples needed to develop and validate diagnostic tests.

    Dr. Horn explains that a survey conducted in January 2025 found that approximately 85% of participating researchers still lacked some of the samples they needed.

    Through the biobank, her team collects, processes, and distributes samples to qualified researchers investigating Lyme disease and associated infections.

    At the time of the interview, the program had enrolled more than 1,250 participants and supported over 115 research projects.

    Why Lyme Disease Testing Remains So Difficult

    Dr. Horn explains that most commonly used Lyme disease diagnostic tests do not directly detect the bacteria responsible for the infection.

    Instead, they measure the body's immune response.

    This distinction is especially important during early infection, when the immune system may not yet have produced detectable antibodies.

    She describes two major categories of diagnostic testing.

    Direct Testing: Looking for Borrelia Itself

    A direct test attempts to identify the pathogen or its genetic material.

    For Lyme disease, that means detecting evidence of Borrelia rather than measuring the immune system's response to it.

    Dr. Horn explains that researchers still need better direct detection methods.

    The development of reliable direct tests could provide new opportunities for diagnosing infection, particularly in situations where antibody testing is inconclusive.

    Indirect Testing: Looking for Antibodies

    Indirect tests, including commonly used Lyme disease serology tests, measure antibodies produced in response to infection.

    The challenge is that antibodies take time to develop.

    Dr. Horn explains that a person may have Lyme disease before their immune response becomes detectable through laboratory testing.

    This creates a diagnostic window during which an infected patient may test negative.

    A negative Lyme disease antibody test early after infection does not necessarily rule out Lyme disease.

    For more information about testing limitations, explore Tick Boot Camp's Lyme disease testing resources.

    Why Two Lyme Disease Tests Can Produce Different Results

    One of the interview's most revealing discussions concerns differences between laboratory assays.

    Dr. Horn explains that two FDA-cleared first-tier antibody tests may not identify exactly the same patients.

    A sample that tests negative using one assay may test positive using another.

    This means the specific test used by a laboratory can influence whether an infection is detected.

    Dr. Horn describes how the Lyme Disease Biobank's well-characterized samples help researchers evaluate these differences.

    Her work underscores why test sensitivity, specificity, timing, and clinical context all matter when interpreting Lyme disease results.

    New Lyme Disease Tests: IGeneX and Multiplex Antibody Technology

    Dr. Horn discusses several promising diagnostic developments supported by biobank samples.

    IGeneX and FDA-Cleared Lyme Disease Testing

    She highlights an IGeneX diagnostic assay that received FDA clearance with the help of clinical samples provided by the Lyme Disease Biobank.

    These samples allowed researchers to evaluate how the test performed in people with documented clinical histories.

    Dr. Horn emphasizes that access to carefully characterized samples is essential for developing and validating new diagnostic technologies.

    FDA clearance does not mean a test is perfect or appropriate for every clinical situation, but it represents an important regulatory milestone.

    Multiplex Testing: Looking at More Than One Antibody Target

    Dr. Horn also describes research involving InBios.

    Its experimental approach examines multiple Borrelia antibody targets rather than relying on a single target.

    She explains that Borrelia expresses different proteins, known as antigens, that may trigger different antibody responses.

    A multiplex test can examine several antibody targets simultaneously.

    Dr. Horn uses a simple analogy:

    Looking at one target is like taking one photograph. Looking at ten targets provides ten different snapshots.

    Researchers hope this broader approach may improve the ability to detect Lyme disease at different stages of infection.

    However, these approaches still require rigorous validation to establish their accuracy and clinical usefulness.

    Could New Lyme Tests Detect Infection Earlier?

    Dr. Horn discusses research involving two experimental single-tier serology tests.

    According to the findings she describes, these approaches showed promise for identifying Lyme disease earlier than some conventional testing methods.

    She references the possibility of detecting infection approximately one week after symptom onset in certain study settings.

    That would represent a meaningful advance for patients who currently face uncertainty during the early stages of infection.

    However, these findings do not mean that every patient can currently obtain a reliable positive test one week after infection.

    Larger studies, regulatory review, and clinical validation are necessary before new diagnostic approaches can become widely adopted.

    Why Some Patients Don't Develop the Expected IgG Antibody Response

    Dr. Horn describes research involving patients who received treatment for early Lyme disease.

    She explains that clinicians often expect an IgG antibody response to develop as time passes.

    However, her research found that some treated patients did not develop the anticipated detectable IgG response.

    This process, known as seroconversion, can be affected by the timing of infection and treatment.

    Dr. Horn explains that antibiotic treatment may change the development of measurable antibodies.

    This is particularly important when interpreting follow-up testing.

    The absence of a later positive IgG test does not necessarily mean an earlier Lyme disease diagnosis was incorrect.

    Likewise, antibody results alone cannot reliably establish whether an infection remains active after treatment.

    One in Five Patients Still Had Symptoms Three Months Later

    Dr. Horn discusses a study involving patients with early Lyme disease who were followed after treatment.

    She reports that approximately 20% continued experiencing symptoms three months later, despite receiving treatment early in their illness.

    These patients had been evaluated at clinical sites experienced in recognizing early Lyme disease.

    The finding raises important questions about why some people experience persistent symptoms even after timely diagnosis and treatment.

    Dr. Horn believes further research is needed to understand the biological mechanisms involved and develop better tools for evaluating patients who remain ill.

    Persistent symptoms after Lyme disease treatment are real and deserve appropriate medical attention, but they do not by themselves establish that live Borrelia bacteria remain present.

    For additional research and patient perspectives, explore Tick Boot Camp's Lyme Persists educational resources.

    What Is the Lyme Disease Biobank?

    Rich asks Dr. Horn to explain the biobank in practical terms for patients and caregivers.

    She describes it as a collection of biological samples donated by people who participate voluntarily in research.

    The program includes samples from individuals with early Lyme disease and people experiencing persistent symptoms.

    Depending on the study, participants may provide:

    • Blood samples
    • Urine samples
    • Information about symptoms and medical history
    • Follow-up samples over time
    • Certain tissues collected during qualifying surgical procedures

    These materials are processed and made available to researchers developing diagnostic tests and investigating disease mechanisms.

    Dr. Horn explains that scientists benefit from knowing the clinical background associated with each sample.

    Without that information, it becomes much harder to determine whether a diagnostic test accurately identifies the patient population it is intended to serve.

    The Lyme Disease Tissue Bank: Studying Borrelia and Bartonella Inside the Body

    One of the most important initiatives discussed is the Lyme Disease Tissue Bank, launched in 2019.

    The program collects selected tissues donated after death by people who had Lyme disease or other tick-borne infections.

    At the time of the interview, Dr. Horn reports that 27 individuals had donated tissues, including brain tissue.

    Additional tissue types may include:

    • Heart
    • Liver
    • Spleen
    • Bladder
    • Muscle
    • Peripheral nerves and other nervous system tissues

    These donations allow researchers to investigate where pathogens or their components may be found and how they might relate to disease processes.

    Dr. Horn emphasizes that the program is not a whole-body donation program.

    Instead, it coordinates the recovery of specific tissues for scientific study.

    Participants interested in postmortem donation must register in advance so arrangements can be made.

    The program can coordinate donations across much of the United States.

    How Tissue Donations Could Help Explain Persistent Lyme Symptoms

    Dr. Horn believes studying human tissue may help answer questions that cannot be resolved through blood testing alone.

    Researchers are interested in understanding whether Borrelia, Bartonella, or other pathogens—or evidence of their prior presence—can be identified in specific tissues.

    The findings could help scientists investigate disease mechanisms, improve diagnostic methods, and identify future research priorities.

    The tissue bank also provides an opportunity to study neurological and other organ-specific complications associated with tick-borne illnesses.

    However, finding bacterial material in tissue does not automatically establish active infection or prove that the organism caused a particular symptom.

    These questions require careful scientific investigation.

    More Than 115 Research Projects Supported

    Dr. Horn explains that the biobank has supported more than 115 research projects.

    Not every project produces a successful diagnostic test.

    Some experimental approaches fail to demonstrate adequate accuracy.

    She emphasizes that these negative findings are still valuable.

    They help researchers identify which approaches are unlikely to work and avoid repeating unsuccessful experiments.

    The biobank also asks participating researchers to share performance data from their studies.

    This allows the program to build knowledge about how different tests perform using its samples.

    Dr. Horn believes this collaborative model accelerates research by allowing scientists to focus on developing and evaluating new technologies rather than independently recruiting every patient needed for early investigations.

    How Lyme Disease Patients Can Contribute to Research

    Near the end of the interview, Rich asks how Tick Boot Camp listeners can help advance Lyme disease research.

    Dr. Horn explains that participation opportunities depend on the specific study and the patient's circumstances.

    Donate Blood or Urine

    Eligible participants in certain geographic areas, including the San Francisco Bay Area, may be able to donate biological samples through participating clinical sites.

    The process typically involves informed consent, health-history questions, and sample collection.

    Consider Tissue Donation

    Some individuals may be eligible to contribute tissue collected during specific surgical procedures.

    Dr. Horn also discusses the possibility of registering for postmortem tissue donation.

    These contributions can support research into the effects of tick-borne pathogens on different organs and tissues.

    Support Patient-Powered Research

    Rich also highlights MyLymeData, a patient-powered research initiative that allows people affected by Lyme disease to share information about their experiences.

    These opportunities provide ways for patients to contribute to research, even when their own health circumstances limit other forms of advocacy.

    For current eligibility requirements and donation information, visit the Lyme Disease Biobank or contact the Bay Area Lyme Foundation.

    When Will Better Lyme Disease Tests Become Available?

    Rich asks Dr. Horn when patients might begin seeing significant improvements in Lyme disease diagnostics.

    Speaking in 2025, she expresses optimism that better tests could begin emerging within approximately two years, with additional progress over the following five years.

    She credits the availability of well-characterized samples, collaboration among research groups, and growing interest in new diagnostic technologies.

    These are research expectations rather than guaranteed development or approval timelines.

    Still, her message is encouraging.

    The tools needed to improve Lyme disease testing are being developed, and patients are helping make that work possible.

    Key Takeaways

    • Current Lyme disease tests have important limitations. Antibody tests may miss infections before a detectable immune response develops.
    • Direct detection remains a major research priority. Scientists need better methods for identifying Borrelia itself.
    • Different FDA-cleared tests may produce different results. The choice of assay can influence detection.
    • Multiplex antibody testing shows promise. Evaluating multiple Borrelia antigens may improve diagnostic performance.
    • Early treatment can affect antibody development. Some treated patients may not develop the expected later IgG response.
    • Persistent symptoms require more research. Dr. Horn discusses findings showing that approximately one in five early-treated patients still reported symptoms after three months.
    • Patient donations are advancing science. Blood, urine, and tissue samples help researchers investigate diagnostic and biological questions.
    • The Lyme Disease Biobank supports collaboration. More than 115 research projects had used its resources at the time of the interview.
    • Patients can help drive progress. Voluntary research participation and advocacy can contribute to the development of better diagnostic tools.

    About This LIVE from ILADS Interview

    Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Dr. Liz Horn, PhD, Principal Investigator of the Lyme Disease Biobank.

    Rich and Dr. Horn discuss the limitations of Lyme disease testing, new diagnostic technologies, FDA-cleared assays, persistent symptoms after treatment, and how donated biological samples are helping advance scientific research.

    They also explore opportunities for patients to contribute to studies that may improve the future of Lyme disease diagnosis and care.

    Discover additional interviews with researchers and healthcare professionals through Tick Boot Camp's LIVE from ILADS podcast series.

21. Episode 610: Why Is Chronic Lyme Disease Harder on Women? – Dr. Anne VanCouvering | LIVE from ILADS

    25.10.202622 Min.Staffel 1 · Folge 610Als Nächstes

    Why do so many women with chronic Lyme disease struggle to get answers—and could stress, hormones, immune function, and medical gaslighting help explain their experiences? In this LIVE from ILADS interview …

    Shownotes

    Why do so many women with chronic Lyme disease struggle to get answers—and could stress, hormones, immune function, and medical gaslighting help explain their experiences?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Anne VanCouvering, ND, a Vermont-based naturopathic doctor who treats patients with Lyme disease, tick-borne infections, mold-related concerns, and complex chronic illness.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why women are so heavily represented in the chronic Lyme disease community, how prolonged stress may affect immune function, and why patients with multisystem symptoms are frequently dismissed by healthcare professionals.

    Dr. VanCouvering also shares her personal journey into Lyme disease medicine, including her son's seven-year struggle with unexplained symptoms, her family's experiences with tick exposure on Long Island, and how ILADS helped shape her clinical approach.

    Their discussion raises important questions about Bartonella, Babesia, neuroinflammation, autism-like symptoms, PANS/PANDAS, environmental exposures, nervous system regulation, and the limitations of conventional medical care.

    Throughout the interview, Dr. VanCouvering emphasizes a principle that every patient deserves to experience: The goal isn't for a doctor to be right. The goal is to help the patient get well.

    Meet Dr. Anne VanCouvering, ND

    Dr. Anne VanCouvering is a naturopathic doctor based in central Vermont who provides telemedicine services to patients in Vermont, New Hampshire, and Massachusetts.

    Her clinical interests include Lyme disease, tick-borne infections, mold-related illness, autism, PANS/PANDAS, and complex chronic health conditions.

    Before attending naturopathic medical school, she operated a massage therapy practice in the Hamptons on Long Island.

    Her interest in medicine developed partly from her desire to understand her son's health challenges.

    She began attending ILADS conferences in 2014, seeking additional education about Lyme disease and associated infections.

    Dr. VanCouvering describes witnessing the growth of integrative and naturopathic approaches within the ILADS community, including increasing discussions of herbal medicine and supportive therapies.

    A Mother's Search for Answers: Seven Years of Unrecognized Lyme Disease

    Dr. VanCouvering's journey into Lyme disease medicine began with her son.

    During his teenage years, he experienced a collection of symptoms that initially appeared unrelated:

    • Excessive sleeping and debilitating fatigue
    • Anxiety and behavioral changes
    • Knee pain
    • Persistent headaches
    • Cognitive difficulties and trouble completing sentences
    • Purple stretch-mark-like skin changes that she later associated with Bartonella

    She initially explored autism and other possible explanations for his symptoms.

    Despite consulting multiple healthcare professionals, she struggled to obtain a diagnosis that explained his overall condition.

    Eventually, a discussion with another physician about purple striae prompted her to reconsider his symptoms.

    She began investigating tick-borne infections and concluded that Lyme disease might be contributing to his illness.

    By that point, approximately seven years had passed since his symptoms began.

    His condition eventually became so severe that, while attending college in Oregon, he reportedly spent three months largely confined to bed.

    Dr. VanCouvering describes traveling to California for additional medical support at Gordon Medical Associates, although the financial burden made continued care difficult.

    She credits a combination of medical care and lifestyle changes with helping her son improve.

    Her experience highlights how difficult it can be for families to navigate complex symptoms, particularly when multiple body systems appear to be affected.

    Clinical context: Purple striae are not diagnostic of Bartonella infection, and symptoms such as fatigue, anxiety, and cognitive changes have many possible causes. Lyme disease requires appropriate clinical evaluation.

    From Long Island to Vermont: A Family History of Tick Exposure

    Dr. VanCouvering discusses her family's extensive history on Long Island, including time spent on Shelter Island.

    Her husband served as a Scoutmaster and experienced frequent tick bites over many years.

    She describes how repeated exposure shaped her awareness of Lyme disease and the practical challenges of tick prevention.

    Rich, also from Long Island, connects with her over the region's history of tick-borne disease research.

    Their conversation highlights how Lyme disease can affect families with extensive outdoor exposure, including hikers, gardeners, hunters, park employees, and other people who spend time in wooded or grassy environments.

    Repeated tick exposure increases opportunities for infection, but it does not mean everyone living in an endemic area has Lyme disease or carries Borrelia.

    For practical prevention and next steps after a tick bite, explore Tick Boot Camp's Tick Bite Blueprint.

    Lyme Disease, Bartonella, Babesia, and the Total Burden of Illness

    Dr. VanCouvering explains that she approaches complicated patient cases by considering more than one possible contributing factor.

    Her evaluations may include:

    • Lyme disease and other tick-borne infections
    • Bartonella and Babesia
    • Environmental mold exposure
    • Possible heavy metal exposure
    • Chronic viral illnesses
    • Stress and nervous system function
    • Individual medical history and genetic factors

    She uses a memorable analogy involving The Godfather and his associates.

    In her metaphor, addressing one major infection may not resolve a patient's symptoms if other medical problems remain unrecognized.

    She believes clinicians should evaluate contributing factors methodically rather than assuming that every symptom has a single explanation.

    However, the presence of multiple symptoms does not establish multiple infections, mold toxicity, or impaired detoxification. Each suspected condition requires appropriate evaluation, and not every proposed testing or treatment approach is clinically validated.

    Chronic Stress, Fight-or-Flight, and the Immune System

    One of the interview's central discussions focuses on the relationship between stress and chronic illness.

    Rich asks whether prolonged stress could affect the immune system in ways that influence a person's response to tick-borne infections.

    Dr. VanCouvering explains the body's stress response using the familiar example of escaping a tiger.

    During a perceived threat, the sympathetic nervous system prepares the body for immediate action.

    Processes such as digestion and other routine functions may temporarily change as the body prioritizes responding to danger.

    She believes prolonged stress may complicate recovery for some patients with chronic illness.

    The conversation also explores the balance between sympathetic and parasympathetic nervous system activity.

    Scientific context: Chronic stress can influence immune signaling, sleep, pain perception, and overall health. However, stress does not simply switch off the immune system, and evidence does not establish that psychological stress causes persistent Borrelia infection or Lyme disease relapse.

    For a related discussion, listen to Tick Boot Camp's interview with Cathleen King about nervous system regulation and Primal Trust.

    Why Are More Women Represented in the Chronic Lyme Disease Community?

    Rich shares an observation from hundreds of Tick Boot Camp interviews: women make up a substantial majority of the patients and practitioners featured on the podcast.

    He asks Dr. VanCouvering whether biological differences, stress, or social expectations could help explain that pattern.

    She identifies several possible contributors.

    Women May Carry More Caregiving and Household Responsibilities

    Dr. VanCouvering discusses the additional responsibilities many women manage outside paid employment.

    These may include raising children, caring for aging relatives, and organizing household responsibilities.

    She believes these demands can contribute to prolonged stress and affect a person's overall well-being.

    Rich also raises the possibility that social media may increase stress for some women.

    Dr. VanCouvering cautions that the issue is more complicated than social media alone.

    Men May Be Less Likely to Seek Medical Care

    Dr. VanCouvering notes that social expectations may discourage some men from discussing symptoms or seeking help.

    She treats men who spend significant time outdoors, including gardeners, hunters, and people working in wooded environments.

    She estimates that her own practice serves approximately 60% women and 40% men.

    This observation raises an important distinction: The demographics of patients seeking treatment do not necessarily reflect the actual distribution of Lyme disease infections.

    Hormonal Changes and Medical Dismissal

    Dr. VanCouvering also discusses hormonal fluctuations and their possible effects on symptoms.

    She believes women may face additional challenges when reporting fatigue, pain, or other difficult-to-explain health problems.

    Both Rich and Dr. VanCouvering express concern that women's physical symptoms are sometimes attributed to anxiety or depression without adequate investigation.

    The discussion raises questions about how medical research, gender bias, and differences in healthcare utilization influence patient experiences.

    Importantly, the interview does not establish that women are biologically more likely than men to develop persistent symptoms after Lyme disease.

    Medical Gaslighting: When Patients Are Told It's All in Their Heads

    Dr. VanCouvering describes patients arriving at her practice in tears after repeatedly being told that their symptoms are psychological.

    She believes medical dismissal can result from limited education, insufficient appointment time, or clinicians' reluctance to acknowledge uncertainty.

    Rich asks whether the problem reflects individual arrogance or broader failures within the healthcare system.

    They discuss how insurance reimbursement, short appointments, demanding schedules, and fragmented specialty care can make it difficult for healthcare professionals to thoroughly evaluate complicated cases.

    Dr. VanCouvering believes that when clinicians cannot explain a patient's symptoms, they should be willing to acknowledge uncertainty and help the patient find appropriate additional care.

    She summarizes her philosophy with a memorable statement:

    “It's not about me being right. It's about getting it right.”

    Her message is that healthcare should prioritize patient outcomes over professional ego.

    Why Multisystemic Illness Requires a Broader Perspective

    Dr. VanCouvering argues that complex chronic illness can be difficult to understand when individual symptoms are evaluated separately.

    A patient may experience neurological, gastrointestinal, musculoskeletal, cardiovascular, and psychological symptoms simultaneously.

    Different specialists may focus on individual organs or systems without developing a coordinated understanding of the overall clinical picture.

    She believes longer appointments, careful listening, and collaboration between practitioners can help identify overlooked medical concerns.

    Rich agrees that the medical system needs better ways to recognize and investigate illnesses involving multiple body systems.

    Their discussion emphasizes the importance of comprehensive medical histories, appropriate testing, and collaboration rather than assuming every unexplained symptom has the same cause.

    Autism, PANS/PANDAS, and Neuroinflammation

    Dr. VanCouvering explains that her original interest in naturopathic medicine involved understanding her son's developmental and behavioral symptoms.

    She continues to see some patients with autism and PANS/PANDAS in addition to those with tick-borne illnesses.

    The interview briefly explores the possibility that inflammatory and infectious conditions can sometimes produce neurological or behavioral symptoms.

    PANS and PANDAS are clinical syndromes associated with the abrupt onset of certain neuropsychiatric symptoms, although their diagnostic evaluation and proposed mechanisms remain subjects of ongoing research.

    Autism is a neurodevelopmental condition and should not be equated with Lyme disease or presumed to be caused by tick-borne infections.

    For a related conversation, explore Tick Boot Camp's interview with Dr. Somer DelSignore about pediatric Lyme disease, autism, PANS/PANDAS, and neuroinflammation.

    How ILADS Changed Dr. VanCouvering's Medical Career

    Dr. VanCouvering first attended ILADS in 2014, when she was still learning how to evaluate Lyme disease and associated infections.

    She remembers that discussions of herbal and integrative approaches initially occupied relatively small conference spaces.

    By the following year, attendance at those sessions had grown substantially.

    She credits ILADS with introducing her to clinicians and educational resources that influenced her approach to complex patient cases.

    Rich and Dr. VanCouvering also discuss how continuing education helps practitioners remain open to new ideas.

    Their conversation illustrates why clinicians need to evaluate emerging research critically while continuing to provide compassionate, evidence-informed care.

    Key Takeaways

    • Lyme disease can affect multiple body systems. Dr. VanCouvering's son's experience motivated her to pursue additional medical education.
    • Delayed diagnosis can profoundly affect families. Her son experienced years of symptoms before she began investigating Lyme disease.
    • Other conditions may complicate recovery. She discusses co-infections, environmental exposures, and stress as factors she considers in selected patients.
    • Stress and immune function are connected. The relationship is complex and does not establish that stress causes persistent Lyme infection.
    • Women's experiences deserve greater attention. The interview explores caregiving demands, hormonal changes, healthcare utilization, and medical dismissal.
    • Men also experience Lyme disease and diagnostic challenges. Social expectations may affect when people seek care.
    • Medical gaslighting can damage trust. Patients deserve clinicians who listen, investigate, and acknowledge uncertainty.
    • Complex illness requires collaboration. Coordinated care can be especially important when symptoms involve multiple systems.
    • Education remains essential. Dr. VanCouvering credits ILADS with helping expand her knowledge of tick-borne diseases.

    About This LIVE from ILADS Interview

    Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation features Rich and Dr. Anne VanCouvering discussing Lyme disease, chronic stress, gender differences, medical gaslighting, and the challenges of treating complex chronic illness.

    The interview also explores her son's health journey, the history of tick exposure on Long Island, and her evolving approach to patient care.

    Rich concludes by inviting Dr. VanCouvering to return for a longer discussion about how Lyme disease should be defined and understood.

    Discover more physician, researcher, and patient conversations through Tick Boot Camp's LIVE from ILADS podcast series.

22. Episode 609: Ticking Point: Filmmaker Reece Robinson on Alpha-Gal Syndrome, Lone Star Ticks & a Growing Tick Crisis

    24.10.202644 Min.Staffel 1 · Folge 609Als Nächstes

    What happens when an Emmy-winning documentary filmmaker turns his camera toward one of the fastest-changing tick problems in the Northeast? In this episode of the Tick Boot Camp Podcast, Matt Sabatello, Tick …

    Shownotes

    What happens when an Emmy-winning documentary filmmaker turns his camera toward one of the fastest-changing tick problems in the Northeast?

    In this episode of the Tick Boot Camp Podcast, Matt Sabatello, Tick Boot Camp Co-Founder, sits down in person with Emmy-winning filmmaker Reece Robinson, director of the upcoming documentary Ticking Point, to explore the rise of lone star ticks, Alpha-Gal Syndrome, Lyme disease, and what communities can do to fight back.

    For Reece, the story is personal. His older brother experienced severe chronic Lyme disease, including Bell’s palsy, cognitive problems, significant pain, intravenous antibiotics, and a period of being bedridden. Years later, Reece watched another tick-related threat begin transforming life on Martha’s Vineyard: the rapid expansion of lone star ticks and growing concern about Alpha-Gal Syndrome.

    Now he is documenting it.

    From Chronic Lyme Disease to Ticking Point

    Reece shares how watching his brother struggle with Lyme disease left a lasting impression on him long before he became a professional filmmaker.

    His career eventually led him into character-driven documentary storytelling and work on National Geographic’s The First Wave, which documented healthcare workers and patients during the earliest months of the COVID-19 pandemic.

    During the summer of 2025, Reece noticed something happening on Martha’s Vineyard that he could no longer ignore. Conversations about ticks and Alpha-Gal Syndrome seemed to be everywhere.

    That experience became the foundation for Ticking Point, a feature-length, solutions-focused documentary examining how communities are responding to expanding tick populations and Alpha-Gal Syndrome.

    What Is Ticking Point?

    Rather than creating what Reece describes as a “doom and gloom” documentary, Ticking Point focuses on people trying to solve the problem.

    The film follows residents, scientists, hunters, public health professionals, and advocates as communities confront questions surrounding:

    • Lone star tick expansion
    • Alpha-Gal Syndrome
    • Deer populations and tick ecology
    • Community-wide tick management
    • Tick-bite prevention
    • Emerging scientific research
    • Public health policy
    • Ecological interventions
    • The challenges of balancing competing community priorities

    Martha’s Vineyard provides a fascinating case study because it combines a significant tick problem with an engaged year-round community actively searching for solutions.

    The question behind the film is much bigger than one island: If Martha’s Vineyard can find ways to meaningfully reduce its tick problem, could those lessons help other communities?

    Alpha-Gal Syndrome and the Lone Star Tick

    Much of the conversation focuses on growing concern surrounding Alpha-Gal Syndrome (AGS), an allergy associated in the United States primarily with bites from lone star ticks.

    Reece discusses stories he has encountered while making the documentary, including people whose reactions extend far beyond simply avoiding steak or hamburgers. For some patients, mammalian-derived ingredients, dairy products, medications containing certain animal-derived ingredients, or even exposure to cooking fumes can become concerns.

    The unpredictable nature of Alpha-Gal Syndrome is one reason Reece believes more research is urgently needed.

    Two people can experience tick exposure and have dramatically different outcomes—and researchers are still working to understand why.

    The Rise of the Lone Star Tick

    Reece describes the lone star tick as a particularly formidable challenge.

    Unlike the more passive questing behavior people often associate with blacklegged ticks, lone star ticks can actively move toward potential hosts. The conversation explores their behavior, expanding presence across parts of the Northeast, and what that expansion could mean for communities already dealing with Lyme disease and other tick-borne illnesses.

    Alpha-Gal Syndrome is also only part of the discussion.

    Matt, Rich, and Reece discuss other conditions associated with lone star ticks, including ehrlichiosis, tularemia, and Southern Tick-Associated Rash Illness (STARI).

    Filming a Long Island Tick Drag with Monica Cipriani

    This interview was recorded at the end of an extraordinary day in the field.

    Before sitting down for the podcast, Reece joined Tick Boot Camp and researcher Monica Cipriani on Long Island to film tick-dragging footage for Ticking Point.

    The results demonstrated just how significant local lone star tick populations can become. The team encountered large numbers of lone star ticks, including dense clusters of larvae commonly called “tick bombs.”

    Reece filmed the fieldwork and plans to use footage from the day in his documentary.

    See what we discovered during our Long Island tick drag with Monica Cipriani and Reece Robinson.

    Searching for Solutions to the Tick Problem

    One of the most important themes of Ticking Point is that there probably won't be one solution to the growing tick problem.

    Reece is documenting approaches that address the issue from multiple directions, including:

    • Deer population management
    • Habitat and landscape management
    • Tick-bite prevention
    • Scientific research
    • Public education
    • Community-based interventions
    • Research into the human immune response
    • Potential future technologies designed to interrupt tick-borne disease transmission

    The conversation also explores the social and political challenges surrounding interventions such as deer management and controlled burns.

    Solutions that may appear straightforward scientifically can become much more complicated when implemented across real communities.

    Can We Prevent Tick-Borne Disease Before the Bite Leads to Illness?

    Reece also discusses scientists exploring entirely new approaches to tick-borne disease prevention.

    That includes research involving genetically modified mice designed to interrupt the transmission cycle of Lyme disease, as well as investigations into immune responses that could someday help researchers better understand how the body responds to tick feeding.

    These ideas remain areas of research rather than immediate solutions, but they illustrate a broader question driving Ticking Point:

    Can we change the environment, ecology, or transmission cycle in ways that prevent people from becoming sick in the first place?

    A Filmmaker With a Personal Connection to Lyme Disease

    Although Reece does not identify as a tick-borne disease patient himself, his brother's experience gives him a perspective familiar to many families in the Lyme community.

    He remembers his brother experiencing Bell’s palsy, severe pain, memory problems, prolonged illness, IV antibiotics, and numerous approaches to treatment.

    That experience now intersects with Reece’s career as a documentary filmmaker.

    His goal with Ticking Point isn't simply to show how frightening ticks can be. It is to document people trying to understand the problem, challenge it, and build solutions.

    Support and Follow Ticking Point

    Ticking Point is currently an independent documentary project, and Reece is looking for people affected by Alpha-Gal Syndrome, researchers, advocates, communities working on tick-control initiatives, and others with meaningful stories to share.

    The project is also accepting tax-deductible financial support through its fiscal sponsor.

    Learn more about Ticking Point, watch the documentary teaser, join the mailing list, or contact Reece Robinson.

    Learn More About Reece Robinson

    Reece Robinson is an Emmy-winning documentary filmmaker whose work focuses on human stories and social issues. His credits include work as a field producer on National Geographic’s The First Wave, documenting the earliest months of the COVID-19 pandemic inside a New York hospital.

    Learn more about Reece Robinson and explore his filmmaking work.

    More From Tick Boot Camp

    Want to continue learning about Lyme disease, Alpha-Gal Syndrome, ticks, and the people working to solve these complex problems?

    Explore more Tick Boot Camp Podcast interviews with patients, doctors, researchers, and advocates.

    If you've recently found a tick or experienced a tick bite, start with the Tick Boot Camp Tick Bite Blueprint.

    And don't miss our behind-the-scenes look at the fieldwork featured in Reece's documentary: Long Island Tick Drag: Tick Bombs, Lone Star Ticks & an Invasive Tick.

23. Episode 608: Can Lyme Disease Contribute to Heart Disease? – Dr. Tom Haidt | LIVE from ILADS

    23.10.202620 Min.Staffel 1 · Folge 608Als Nächstes

    Could Lyme disease and other tick-borne infections be overlooked contributors to arterial inflammation, heart disease, and stroke risk? In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects …

    Shownotes

    Could Lyme disease and other tick-borne infections be overlooked contributors to arterial inflammation, heart disease, and stroke risk?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. H. Thomas “Tom” Hight, MD, a board-certified internal medicine physician and clinical lipidologist specializing in cardiovascular disease prevention and arterial health.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores a provocative question: Could certain infections contribute to cardiovascular inflammation in ways that conventional heart disease evaluations don't routinely investigate?

    Dr. Hight shares observations from his Atlanta-based practice, where he monitors arterial health using serial ultrasound examinations and cardiovascular biomarkers.

    He describes patients whose arterial measurements worsened despite improvements in traditional risk factors, prompting him to investigate additional possible contributors, including chronic viral infections and tick-borne illnesses.

    The discussion covers Lyme disease, Bartonella, endothelial inflammation, atherosclerosis, plaque regression, heart attacks, strokes, Lyme carditis, and emerging research into vascular health and dementia.

    Dr. Hight also explains why he believes cardiovascular prevention should look beyond cholesterol and blood pressure while emphasizing the importance of addressing all relevant risk factors.

    His observations raise important research questions, although a direct causal relationship between persistent tick-borne infection and coronary atherosclerosis has not been established.

    Meet Dr. Tom Hight, MD

    Dr. H. Thomas Hight, MD is a physician specializing in cardiovascular risk reduction, arterial disease, and clinical lipidology.

    Based in Atlanta, Georgia, he has spent years working with patients who have experienced heart attacks, strokes, and other serious cardiovascular events.

    Dr. Hight developed an ultrasound-based approach to monitoring changes in arterial health over time.

    His practice, CardioSound, focuses on identifying and addressing factors that may contribute to cardiovascular disease progression.

    His growing interest in Lyme disease began after observing unexpected changes in patients whose cardiovascular risk factors appeared to be improving.

    He attended an ILADS conference in Boston to learn more about tick-borne illnesses and their possible cardiovascular implications.

    This interview follows his earlier appearance on Tick Boot Camp, where he first discussed the potential relationship between Lyme disease and cardiovascular risk.

    Why Dr. Hight Started Investigating Lyme Disease in Heart Patients

    Dr. Hight explains that his practice regularly monitors patients who have already experienced cardiovascular events.

    These patients face increased risks of subsequent heart attacks, strokes, and other complications.

    His approach includes repeat arterial ultrasound studies approximately every three to four months, alongside laboratory testing and comprehensive risk-factor management.

    He looks for evidence that arterial disease is stabilizing or improving.

    However, following the COVID-19 pandemic, he noticed an unexpected pattern.

    Some patients who had previously shown improvements began experiencing worsening arterial findings.

    This prompted him to reconsider whether additional inflammatory or infectious factors might be contributing to their cardiovascular risk.

    He began evaluating selected patients for chronic viral illnesses and tick-borne infections.

    Dr. Hight reports that some patients subsequently showed improvements in inflammatory biomarkers and arterial measurements during treatment.

    These observations motivated his continued interest in the relationship between infectious disease and cardiovascular health.

    Lyme Disease, Bartonella, and Endothelial Inflammation

    A central theme of the conversation is the endothelium, the thin layer of cells lining the inside of blood vessels.

    Endothelial cells play important roles in vascular function, blood flow, inflammation, and clotting.

    Dr. Hight discusses how certain infections may affect vascular tissues and potentially contribute to inflammatory processes.

    He is particularly interested in Borrelia, the bacteria responsible for Lyme disease, and Bartonella species.

    Both infections have recognized cardiovascular manifestations under certain circumstances, although their mechanisms and clinical presentations differ.

    Dr. Hight believes further research is needed to determine whether some tick-borne infections contribute to the progression of atherosclerosis.

    Does Treating Infections Improve Arterial Health?

    Dr. Hight reports observing reductions in inflammatory biomarkers followed by improvements in arterial ultrasound findings among some patients receiving treatment.

    He emphasizes that infection management is only one part of his cardiovascular approach.

    His patients also receive attention to cholesterol, blood pressure, metabolic health, and other established cardiovascular risk factors.

    Because multiple interventions may occur together, these clinical observations cannot determine which intervention caused the improvements.

    Dr. Hight acknowledges that more research is necessary to establish cause-and-effect relationships.

    Understanding Atherosclerosis and Plaque Regression

    Atherosclerosis develops when plaque accumulates within artery walls.

    Plaque contains lipids, inflammatory cells, connective tissue, and other materials.

    Over time, atherosclerosis can restrict blood flow or contribute to events such as heart attacks and strokes.

    Dr. Hight explains that he uses repeated ultrasound studies to evaluate changes in arterial disease.

    He discusses plaque regression, which refers to a reduction in atherosclerotic plaque burden.

    He believes monitoring arterial changes over time provides valuable information about whether a patient's cardiovascular risk-management plan is working.

    Although plaque regression can occur with effective treatment, interpreting ultrasound changes requires appropriate measurement techniques and clinical context.

    Dr. Hight also describes strong survival outcomes in his own practice. These are self-reported clinical observations, not independently verified results from a controlled study.

    Beyond Cholesterol: More Than 20 Modifiable Heart Disease Risk Factors

    Dr. Hight argues that cardiovascular medicine should consider a wider range of potentially modifiable risk factors.

    He explains that many routine discussions focus primarily on:

    • Cholesterol
    • Blood pressure
    • Diabetes
    • Smoking
    • Obesity

    These are important, well-established cardiovascular risk factors.

    However, Dr. Hight believes clinicians should also investigate other contributors when patients experience unexpected disease progression.

    He describes evaluating more than 20 modifiable factors in his practice.

    His broader approach includes inflammatory markers and, in selected circumstances, possible infectious contributors.

    The conversation emphasizes that patients who have experienced a heart attack or stroke benefit from comprehensive secondary prevention, including evidence-based medication, lifestyle management, and appropriate specialist follow-up.

    Cardiovascular Biomarkers: Troponin T, NT-proBNP, and IL-6

    Dr. Hight discusses several laboratory markers that helped prompt his investigation into additional inflammatory processes.

    These include:

    High-sensitivity troponin T: A biomarker associated with heart muscle injury. Interpretation depends on the clinical situation and the degree and pattern of elevation.

    NT-proBNP: A biomarker commonly used in the evaluation of heart failure and cardiac stress.

    Interleukin-6 (IL-6): An inflammatory signaling molecule involved in immune responses and multiple disease processes.

    Dr. Hight reports seeing changes in certain markers alongside changes in arterial health.

    He believes these measurements may provide clues when investigating patients whose cardiovascular disease is not improving as expected.

    However, these biomarkers are not specific tests for Lyme disease, Bartonella infection, or infection-related atherosclerosis.

    Lyme Carditis vs. Coronary Artery Disease

    Rich and Dr. Hight discuss the distinction between established cardiac complications of Lyme disease and the broader possibility of infection-associated atherosclerosis.

    Lyme carditis is a recognized manifestation of Lyme disease that can affect the heart's electrical conduction system, sometimes causing atrioventricular block.

    Symptoms may include palpitations, dizziness, fainting, shortness of breath, and chest discomfort.

    Coronary artery disease is different.

    It generally involves atherosclerotic plaque buildup in arteries supplying the heart muscle.

    Dr. Hight believes more research should investigate whether tick-borne infections contribute to coronary artery disease in selected patients.

    However, Lyme carditis does not establish that Lyme disease is a common cause of atherosclerosis.

    For a related conversation, listen to Tick Boot Camp's interview with Dr. Medeya Tsnobiladze about the neurological and cardiovascular impacts of Lyme disease.

    Should Heart Attack Patients Be Tested for Lyme Disease?

    Rich asks whether tick-borne disease testing should become part of routine cardiovascular evaluations.

    Dr. Hight believes infectious contributors deserve more consideration, particularly when a patient's clinical history raises relevant questions.

    He acknowledges that evidence establishing the relationship between Lyme disease and atherosclerosis remains incomplete.

    Currently, routine Lyme disease testing for every heart attack patient is not an established standard of care.

    Testing decisions should consider symptoms, possible tick exposure, geographic risk, and the likelihood that results will meaningfully guide medical management.

    The discussion also addresses the financial burden of specialty testing and the importance of determining whether additional tests offer meaningful clinical value.

    Do Patients Always Need Coronary Stents?

    Dr. Hight discusses the role of coronary stents in treating certain forms of heart disease.

    He acknowledges that stents can be lifesaving when appropriately used.

    However, he questions whether some patients with stable coronary artery disease undergo procedures that may not improve their long-term outcomes.

    He references two major clinical trials:

    COURAGE Trial: Investigated optimal medical therapy with or without percutaneous coronary intervention in selected patients with stable coronary artery disease.

    ISCHEMIA Trial: Compared an initial invasive strategy with a conservative strategy in patients with stable ischemic heart disease.

    These studies helped clarify the benefits and limitations of invasive procedures in particular patient populations.

    The findings do not mean stents are unnecessary for all patients without symptoms or that medical treatment can replace urgent intervention during a heart attack.

    Treatment decisions depend on the patient's clinical condition, coronary anatomy, symptoms, and overall risk.

    Could Vascular Inflammation Contribute to Dementia?

    Near the end of the interview, Dr. Hight discusses his interest in the relationship between large-vessel disease, small-vessel disease, and cognitive health.

    He explains that vascular problems can affect both the heart and brain.

    Large-vessel disease can contribute to heart attacks and strokes, while cerebral small-vessel disease can contribute to cognitive impairment and vascular dementia.

    Dr. Hight hopes future research will identify better biomarkers and interventions that help clinicians recognize and manage vascular disease earlier.

    He raises the possibility that improved understanding of inflammatory mechanisms could benefit both cardiovascular and neurological health.

    This is a research goal, not evidence that treating Lyme disease reverses dementia.

    The Future: Better Biomarkers, Research, and Prevention

    Dr. Hight hopes to continue studying the potential relationship between tick-borne infections and cardiovascular disease.

    He expresses interest in presenting his clinical observations at a future ILADS conference.

    His broader goal is to develop better tools that help healthcare professionals identify risk factors, monitor arterial health, and intervene before serious cardiovascular events occur.

    Rich encourages him to share his findings with the wider medical community.

    Both agree that research, collaboration, and education are essential for answering questions about the possible cardiovascular consequences of tick-borne infections.

    Key Takeaways

    • Lyme disease has recognized cardiac complications. Lyme carditis can affect the heart's electrical conduction system.
    • The relationship between Lyme disease and atherosclerosis remains uncertain. Dr. Hight's clinical observations raise questions that require controlled research.
    • Endothelial health matters. The inner lining of blood vessels plays a central role in vascular function and inflammation.
    • Heart disease prevention involves multiple risk factors. Cholesterol, blood pressure, diabetes, smoking, and other established risks remain essential treatment targets.
    • Serial arterial imaging may help monitor selected patients. Dr. Hight uses ultrasound to evaluate changes in arterial disease over time.
    • Biomarkers can provide important clinical information. Troponin T, NT-proBNP, and IL-6 have different uses and limitations.
    • Coronary stents have an important but specific role. Their benefits depend on the clinical situation.
    • Vascular health and cognitive health are connected. Research into cerebral small-vessel disease may improve understanding of vascular dementia.
    • Further research is needed. Dr. Hight hopes to investigate whether selected tick-borne infections contribute to cardiovascular disease progression.

    About This LIVE from ILADS Interview

    Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this interview reunites Rich with Dr. Tom Hight for an update on his clinical observations and cardiovascular research interests.

    The conversation explores Lyme disease, Bartonella, arterial inflammation, atherosclerosis, heart attack prevention, plaque regression, and the possibility of improved vascular health through comprehensive risk-factor management.

    Explore additional interviews with healthcare professionals and researchers through Tick Boot Camp's LIVE from ILADS podcast series.

24. Episode 607: Lyme Disease, Medical Gaslighting & Finding Hope – Anne Desjardins | LIVE from ILADS

    22.10.202629 Min.Staffel 1 · Folge 607Als Nächstes

    For seven years, Anne Desjardins struggled with unexplained symptoms, medical dismissal, depression, and thoughts of suicide before finally receiving a Lyme disease diagnosis. Today, she's helping others find …

    Shownotes

    For seven years, Anne Desjardins struggled with unexplained symptoms, medical dismissal, depression, and thoughts of suicide before finally receiving a Lyme disease diagnosis. Today, she's helping others find the hope she once desperately needed.

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Anne Desjardins, a Pennsylvania Lyme disease advocate, Ayurvedic practitioner, support group leader, and host of The Silver Lyming podcast.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores delayed Lyme disease diagnosis, neurological symptoms, medical gaslighting, mental health, integrative healing, financial hardship, and the power of sharing patient recovery stories.

    Anne opens up about losing her independence, struggling to remember people's names, and reaching a point where she no longer wanted to live. She also shares how her diagnosis, treatment, lifestyle changes, and supportive community helped her rebuild her life and discover a new purpose.

    Her story is a reminder that a difficult chapter doesn't have to be the final chapter—and that hearing someone else's recovery story can help make hope feel possible again.

    Seven Years of Symptoms Before a Lyme Disease Diagnosis

    Anne believes she contracted Lyme disease in Pennsylvania, one of the states most heavily affected by tick-borne illness.

    She began noticing symptoms around age 30, but her initial attempts to find medical answers were unsuccessful.

    Healthcare professionals repeatedly attributed her symptoms to stress, depression, or being overly emotional.

    Anne remembers trying to explain that she was becoming depressed because she felt physically ill every day—not the other way around.

    Over time, her symptoms became increasingly disruptive:

    • Hearing loss in her left ear
    • Heart palpitations and episodes of fluttering
    • Severe dizziness, particularly when turning her head
    • Memory loss, confusion, and difficulty concentrating
    • Speech problems, including stuttering
    • Overwhelming fatigue and reduced ability to perform daily activities
    • Depression, social withdrawal, and suicidal thoughts

    She eventually became concerned that she might have a brain tumor.

    After years of unsuccessful medical appointments, a physician finally suspected Lyme disease and ordered testing.

    When the result came back positive, Anne felt an overwhelming sense of relief.

    She finally had a diagnosis that could help guide her next steps.

    Medical Gaslighting, Depression, and the Mental Health Impact of Chronic Illness

    Anne describes how repeated dismissal affected her confidence, relationships, and emotional well-being.

    When doctors told her nothing was wrong, she began questioning herself.

    She became embarrassed by her cognitive symptoms and increasingly avoided social situations.

    At one event, she introduced herself to the same person twice within minutes because she couldn't remember their first interaction.

    Daily activities such as showering, doing laundry, cleaning, or visiting friends became difficult.

    Anne also discusses using alcohol to cope with years of physical and emotional suffering.

    Eventually, she experienced suicidal thoughts and wondered whether she would ever regain her life.

    Rich asks whether those thoughts were driven by the illness itself, the prolonged diagnostic journey, or the hopelessness that developed along the way.

    Anne believes multiple factors contributed. She describes feeling disconnected from herself and eventually learning to recognize that distressing thoughts did not define her identity.

    Her experience highlights why mental health support and compassionate medical care are important for people living with disabling chronic symptoms.

    If you're struggling with thoughts of suicide, you deserve immediate support. In the United States, call or text 988 to reach the Suicide & Crisis Lifeline.

    For additional conversations about the psychological impact of Lyme disease, explore Tick Boot Camp's mental health and Lyme disease interview with therapist Christina Kantzavelos.

    Lyme Disease Treatment and Anne's Personal Healing Journey

    After receiving her diagnosis, Anne began antibiotic treatment through her family physician.

    She initially experienced significant improvement, describing the experience as finally feeling human again.

    However, some neurological and cognitive symptoms returned during treatment.

    She received additional antibiotics and eventually began working with a clinician experienced in treating Lyme disease.

    Anne describes approximately two and a half additional years of antibiotic treatment, alongside herbal supplements and other supportive approaches.

    One influential resource was Unlocking Lyme by Dr. Bill Rawls, MD.

    Unable to comfortably read at the time because of her cognitive symptoms, Anne listened to the audiobook and found encouragement in Dr. Rawls' recovery story.

    She gradually incorporated additional changes into her daily routine, including:

    • Dietary adjustments and avoiding foods she personally felt worsened her symptoms
    • Eliminating alcohol and caffeine
    • Herbal approaches discussed with her healthcare provider
    • Hot yoga and regular movement
    • Mindfulness, spirituality, and self-reflection
    • Exploring Ayurveda and holistic wellness practices

    Anne credits these combined changes with helping her regain function and improve her quality of life.

    She emphasizes that her transformation happened gradually over several years.

    Her experiences reflect an individualized recovery journey rather than a treatment protocol proven to work for everyone. In particular, hot yoga, restrictive diets, and herbal products have not been established as cures for Lyme disease, and prolonged heat exposure can pose risks for some patients.

    Discovering Ayurveda and a New Perspective on Health

    As Anne's health improved, she became increasingly interested in Ayurveda, a traditional system of medicine originating in India.

    She was drawn to its emphasis on daily routines, seasonal changes, nutrition, and the relationship between physical and emotional well-being.

    Anne eventually pursued formal education to become an Ayurvedic practitioner.

    She describes this experience as part of a broader personal transformation.

    Rather than viewing recovery solely as the absence of symptoms, she began exploring how her experience had changed her priorities, relationships, and understanding of herself.

    Anne acknowledges that she would never have chosen the suffering she experienced, but she now values the perspective and sense of purpose that emerged from it.

    Turning Pain Into Purpose Through Pennsylvania Lyme Advocacy

    As Anne regained her health, she became determined to help others avoid the isolation and confusion she had experienced.

    She began leading a support group through the PA Lyme Resource Network, a volunteer-driven nonprofit focused on tick-borne disease education, prevention, patient support, and advocacy.

    Anne is associated with the organization's Berks County region and has participated in community outreach and prevention education.

    She also discusses becoming involved in Pennsylvania's public education efforts connected to Act 83, the state's Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act.

    Her advocacy focuses on helping people recognize potential tick-borne disease symptoms, understand prevention strategies, and find supportive resources.

    The Financial Burden of Lyme Disease

    Anne speaks candidly about the financial challenges many patients face.

    Her own treatment journey was expensive, and she describes hearing from people who struggle to afford testing, appointments, treatment, housing, or basic necessities.

    She also raises concerns about insurance coverage and access to knowledgeable healthcare professionals.

    Rich and Anne agree that patients should not have to face financial devastation while searching for answers.

    For Pennsylvania residents seeking community support or practitioner referrals, the PA Lyme Resource Network's patient resources provide a starting point.

    The Silver Lyming: A Podcast Dedicated to Hope and Healing

    Anne eventually transformed her advocacy into a podcast called The Silver Lyming.

    The title reflects her belief that meaningful growth, connection, and purpose can sometimes emerge from extremely difficult experiences.

    At the time of this interview, Anne had recently released her 75th episode.

    Her podcast features people who share their experiences with Lyme disease, tick-borne infections, chronic illness, and recovery.

    Rather than focusing exclusively on symptoms and suffering, Anne seeks out stories that demonstrate different paths toward improved health and renewed purpose.

    She believes hearing from people who have made progress can help listeners feel less isolated and more hopeful about their own futures.

    Anne also discovered that podcasting benefits the guests themselves.

    Several have told her that sharing their experiences publicly helped them process what they had endured.

    For Anne, the podcast has become a place where people can speak openly, feel heard, and connect with others who understand.

    Listen to The Silver Lyming with Anne Desjardins on Apple Podcasts.

    Why Positive Lyme Disease Communities Matter

    Rich and Anne discuss the importance of finding supportive spaces during chronic illness.

    Both recognize that patients need opportunities to express frustration, grief, anger, and disappointment.

    However, Anne explains that when she was seriously ill, she actively searched for stories of people who had improved.

    She found those stories encouraging at a time when her future felt uncertain.

    Rich emphasizes the value of multiple patient-led podcasts and advocacy platforms.

    Different hosts bring different perspectives, ask different questions, and connect with different audiences.

    He explains that Tick Boot Camp wants people to discover whatever resources best meet their needs, even when those resources come from another podcast.

    Their conversation reinforces an important principle: Community should make people feel seen, supported, and empowered—not pressured to follow someone else's healing journey.

    Being surrounded by illness-related discussions does not cause someone to remain sick, but choosing supportive communities can improve emotional well-being.

    Finding Purpose After Chronic Illness

    Near the end of the interview, Anne and Rich reflect on the relationship between suffering, identity, and purpose.

    Anne explains that Lyme disease changed nearly every aspect of her life.

    She lost years to debilitating symptoms, but she also developed new relationships, pursued education, became an advocate, and created a platform to support others.

    One of her favorite questions to ask podcast guests is what positive change, if any, emerged from their experience with Lyme disease.

    The answers vary.

    Some people would never choose to experience the illness again. Others recognize meaningful personal growth alongside the suffering.

    Anne believes both perspectives deserve space.

    Her story demonstrates that finding purpose after illness does not require being grateful for the illness itself.

    People can acknowledge profound losses while still discovering new possibilities for their future.

    Key Takeaways

    • Delayed Lyme disease diagnosis can have far-reaching consequences. Anne experienced years of neurological, cognitive, physical, and emotional symptoms before receiving answers.
    • Medical dismissal can deepen isolation. Being told symptoms are caused by stress or depression may leave patients feeling unheard.
    • Mental health deserves attention. Anne openly discusses suicidal thoughts, depression, and the emotional toll of prolonged illness.
    • Recovery experiences vary. Her journey involved medical treatment, lifestyle changes, integrative practices, and community support.
    • Financial barriers remain a major concern. Testing, treatment, and lost income can create serious hardship for patients and families.
    • Patient advocacy creates connection. Anne's work with PA Lyme Resource Network helps people access education and support.
    • Stories of improvement can inspire hope. Through The Silver Lyming, Anne helps others see that progress and meaningful life changes are possible.

    About This LIVE from ILADS Interview

    Recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas, this conversation introduces Anne Desjardins to the Tick Boot Camp community.

    Rich and Anne discuss her seven-year diagnostic journey, Lyme disease treatment experiences, mental health struggles, Pennsylvania advocacy work, and the creation of The Silver Lyming podcast.

    They also discuss collaborating on future long-form interviews to explore Anne's healing journey in greater depth.

    Discover more patient, physician, researcher, and advocate conversations through Tick Boot Camp's LIVE from ILADS podcast series.

25. Episode 606: Neurological Lyme, Seizures & Misdiagnosis – Dr. Pamela Cipriano | LIVE from ILADS

    21.10.202626 Min.Staffel 1 · Folge 606Als Nächstes

    What happens when Lyme disease patients develop seizures, neurological symptoms, or serious complications—and the treatments they're receiving aren't working? In this LIVE from ILADS interview, Tick Boot Camp …

    Shownotes

    What happens when Lyme disease patients develop seizures, neurological symptoms, or serious complications—and the treatments they're receiving aren't working?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. Pamela Cipriano, DNP, APRN, a Connecticut nurse practitioner specializing in Lyme disease, tick-borne infections, and complex chronic illness.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores neurological Lyme disease, persistent seizures, suspected autoimmune encephalitis, Bartonella, Babesia, chronic urinary tract infections, and the challenges of caring for patients with complicated medical histories.

    Dr. Cipriano shares two neurological case studies involving a 25-year-old man and a 14-year-old girl, discusses why some healthcare professionals hesitate to consider alternative diagnoses, and explains her efforts to improve Lyme disease education.

    She also reflects on her personal journey into tick-borne disease medicine, her son's illness, her training with Dr. Richard Horowitz, and her candidacy for the ILADS Board of Directors.

    Throughout the conversation, one message stands out: Patients with persistent, unexplained symptoms deserve continued investigation, compassionate care, and healthcare professionals willing to collaborate.

    Meet Dr. Pamela Cipriano, DNP, APRN

    Dr. Pamela Cipriano is a Connecticut-based advanced practice registered nurse with a Doctor of Nursing Practice degree.

    Her professional background includes hospital medicine, critical care, pharmaceutical sales, and the evaluation of patients with Lyme disease and other complex health conditions.

    She joined ILADS in 2018 and has attended nearly every annual conference since becoming a member.

    Dr. Cipriano explains that ILADS conferences expose her to research and clinical discussions involving tick-borne pathogens, immune function, environmental exposures, and different treatment approaches.

    She emphasizes her interest in integrative medicine and individualized patient care.

    Her decision to enter the field was deeply personal.

    After her son developed significant health problems, including chronic bladder symptoms, she began investigating Lyme disease and associated infections.

    That experience ultimately helped shape her professional focus.

    Neurological Lyme Disease: Two Patients With Persistent Seizures

    One of the most important parts of the interview focuses on two patients featured in Dr. Cipriano's ILADS poster presentation.

    The cases involve a 25-year-old man and a 14-year-old girl experiencing serious neurological complications.

    Dr. Cipriano describes both patients as having neuroborreliosis-related concerns.

    She explains that the patients developed seizures after beginning antibiotic treatment for Lyme disease.

    The cases became particularly challenging because the patients continued experiencing neurological symptoms despite receiving anticonvulsant medications.

    The 25-year-old patient, she reports, was taking three seizure medications and still experiencing seizures.

    Dr. Cipriano began questioning whether an inflammatory or autoimmune neurological process might be contributing to his symptoms.

    She discusses researching autoimmune encephalitis and sharing relevant literature with the patients' neurologists.

    Could Autoimmune Encephalitis Be Overlooked?

    Autoimmune encephalitis occurs when the immune system attacks components of the brain, potentially causing seizures, behavioral changes, memory problems, and other neurological symptoms.

    Dr. Cipriano raises concerns that clinicians may sometimes focus on controlling seizures without sufficiently investigating their underlying causes.

    She discusses corticosteroids as one possible treatment used for certain inflammatory neurological disorders.

    However, persistent seizures do not automatically indicate autoimmune encephalitis or neurological Lyme disease. Both conditions require careful diagnostic evaluation, and corticosteroids are not appropriate for every seizure disorder or infection.

    New seizures, prolonged seizures, or repeated seizures without recovery are medical emergencies. Patients should receive prompt neurological evaluation and appropriate treatment.

    When Patients and Families Find Support Through Shared Experiences

    Dr. Cipriano explains that the two neurological patients eventually met through their treatment schedules.

    Although they had not previously known one another, their families began connecting during appointments.

    They shared experiences, asked about each other's progress, and developed a sense of understanding.

    For families navigating severe neurological illness, these connections can provide meaningful emotional support.

    Their experiences also illustrate why community matters when patients face prolonged diagnostic uncertainty.

    Knowing another family understands the challenges can reduce isolation, even when their medical situations are different.

    Why Some Doctors Hesitate to Explore Unfamiliar Diagnoses

    Rich asks Dr. Cipriano why healthcare professionals sometimes resist investigating conditions outside their established areas of expertise.

    She believes medical training, professional expectations, and concerns about colleagues' opinions may influence clinical decisions.

    Dr. Cipriano reflects on her previous work as a hospitalist and explains that she has always been willing to question established approaches when patients are not improving.

    She believes clinicians should remain open to additional evidence and consultation when a treatment plan is unsuccessful.

    Rich also discusses the professional and regulatory pressures faced by physicians who treat complicated tick-borne disease cases.

    They reference the history of Dr. Joseph Burrascano, whose work in Lyme disease has been influential within the ILADS community.

    Their discussion highlights the importance of balancing professional responsibility, patient safety, scientific evidence, and clinical judgment.

    A Lyme Disease Education Survey With Only 26 Responses

    Dr. Cipriano describes an effort to understand how much local healthcare professionals know about Lyme disease.

    She distributed 300 surveys to physicians, nurse practitioners, physician assistants, chiropractors, and naturopathic practitioners.

    Only 26 responses were returned.

    That represents a response rate of approximately 8.7%.

    Dr. Cipriano found the limited participation discouraging.

    She also shares that a former colleague contacted her privately to express support for her educational efforts.

    The experience reinforced her belief that healthcare professionals need more opportunities to discuss Lyme disease openly and constructively.

    Although the response rate does not establish what clinicians know or believe about Lyme disease, it illustrates the challenges Dr. Cipriano encountered while trying to encourage professional engagement.

    Why Dr. Cipriano Ran for the ILADS Board of Directors

    During the interview, Dr. Cipriano announces that she is running for the ILADS Board of Directors.

    Her motivation is to expand membership, improve communication, and encourage more healthcare professionals to participate in Lyme disease education.

    She believes her previous career in pharmaceutical sales provides skills that could help.

    Before focusing on tick-borne disease care, Dr. Cipriano spent approximately 14 years in pharmaceutical sales and marketing.

    She describes working with hospitals and medical decision-makers to explain treatment options and develop professional relationships.

    One of the medications she represented was ceftriaxone, commonly known by the brand name Rocephin.

    Ceftriaxone is an antibiotic used for certain serious bacterial infections, including selected neurological and cardiac manifestations of Lyme disease.

    Dr. Cipriano believes her communication experience could help ILADS reach healthcare professionals who are unfamiliar with its work.

    Her goal is to build relationships rather than create confrontation.

    She wants clinicians to better understand the experiences of patients with complex tick-borne illnesses and the research being discussed within the ILADS community.

    From Her Son's Illness to Lyme Disease Practitioner

    Dr. Cipriano explains that she began treating Lyme disease around 2017.

    Her son's illness played a major role in that transition.

    Initially, she focused on Lyme disease after his testing identified Borrelia.

    When his symptoms did not improve as expected, she began considering other possible infections.

    She later pursued additional education through ILADS and trained with Dr. Richard Horowitz, MD.

    Dr. Cipriano credits that training with helping her develop a broader approach to evaluating patients with complicated symptoms.

    She also discusses her son's reported improvement after treatment that addressed suspected additional infections.

    His experience remains a personal clinical account and does not establish that every patient with persistent Lyme disease symptoms has Bartonella or Babesia.

    The Three Bs and Four Bs of Tick-Borne Illness

    Rich and Dr. Cipriano discuss how the Lyme disease community increasingly talks about multiple infections rather than Borrelia alone.

    They reference the three Bs:

    • Borrelia: The bacteria responsible for Lyme disease
    • Bartonella: A group of bacteria associated with several human infections
    • Babesia: Parasites that infect red blood cells and cause babesiosis

    Dr. Cipriano also mentions a fourth category involving other Borrelia species associated with tick-borne relapsing fever.

    She reports encountering more patients with laboratory findings suggesting multiple infections.

    Rich asks whether this reflects improvements in testing, increased clinical awareness, or changes in tick-borne pathogen exposure.

    Dr. Cipriano believes several factors may be involved.

    However, the presence of multiple microorganisms in ticks does not mean every organism can infect humans or that every tick bite transmits multiple diseases.

    Appropriate testing should be guided by symptoms, exposure history, geography, and validated diagnostic methods.

    Parasites, Specialty Laboratories, and Diagnostic Challenges

    Dr. Cipriano describes patients who have presented with suspected parasitic infections.

    She discusses the challenges of identifying organisms through laboratory testing and her experience seeking additional evaluations when initial results were inconclusive.

    She also raises concerns about the cost of specialty testing, particularly when patients must pay out of pocket.

    Her examples include suspected intestinal parasites and other organisms that require identification by qualified laboratories.

    During the conversation, Dr. Cipriano expresses her belief that some of these infections may be associated with tick exposure.

    Identifying a suspected parasite requires appropriate clinical evaluation and laboratory confirmation. Visual appearance alone may not establish a diagnosis.

    The discussion illustrates the frustration patients and clinicians can experience when trying to understand unusual or difficult-to-identify findings.

    Mold, Heavy Metals, and Environmental Testing

    Dr. Cipriano also discusses evaluating patients for possible environmental exposures.

    She mentions mold-related concerns, mycotoxins, and heavy metals as areas she considers in selected cases.

    She explains that different laboratories use different testing methods and that she sometimes turns to specialty laboratories when investigating complicated presentations.

    However, the accuracy and clinical usefulness of tests vary.

    Urine mycotoxin testing is not established as a reliable method for diagnosing illness caused by indoor mold exposure, and heavy metal testing should be selected according to credible exposure history and validated medical standards.

    The interview underscores the importance of interpreting laboratory findings carefully rather than assuming every positive result identifies the cause of a patient's symptoms.

    Caring for Patients Other Practitioners Consider Too Complicated

    Dr. Cipriano shares that some patients arrive after being turned away by other healthcare professionals.

    She recalls a mother who contacted numerous Lyme disease practitioners before finding someone willing to evaluate her adult child's complicated case.

    Dr. Cipriano explains that her background in critical care has made her comfortable working with medically complex patients.

    She also acknowledges the significant time commitment involved.

    Her patients may require extensive follow-up, ongoing reassessment, and coordination with other specialists.

    She describes working long days and frequently thinking about difficult cases outside normal office hours.

    Her commitment reflects a central theme of the conversation: patients with complicated illnesses need clinicians who are willing to investigate, communicate, and continue reassessing their care.

    Looking Ahead: Better Education and More Hope for Patients

    Near the end of the interview, Rich asks Dr. Cipriano what she hopes will change over the following year.

    She expects to encounter more patients with complex illnesses and hopes to continue expanding her educational outreach.

    Most importantly, she wants fewer patients to hear that their symptoms are simply imagined.

    She encourages healthcare professionals to remain curious, seek additional education, and acknowledge when a condition falls outside their expertise.

    Dr. Cipriano also discusses sharing information through her website, social media, and YouTube channel.

    She clarifies that she does not currently host her own podcast but participates in interviews with other organizations.

    Rich encourages her to continue sharing her perspective because patients benefit from hearing different voices within the medical community.

    Their conversation ends with a shared hope for greater understanding, collaboration, and improved access to knowledgeable care.

    Key Takeaways

    • Neurological symptoms deserve careful evaluation. Dr. Cipriano discusses two patients with persistent seizures and suspected inflammatory neurological complications.
    • Autoimmune encephalitis is an important differential diagnosis. Certain patients with unexplained seizures may require investigation beyond routine epilepsy management.
    • Professional education remains a challenge. Her Lyme disease survey received 26 responses from 300 invitations.
    • ILADS plays an important role in her career. She has been a member since 2018 and was running for its Board of Directors at the time of the interview.
    • Her son's illness influenced her medical career. Personal experience led her to pursue additional training in Lyme disease and associated infections.
    • Tick-borne illnesses extend beyond Borrelia. The discussion includes Bartonella, Babesia, and tick-borne relapsing fever.
    • Unusual laboratory findings require careful interpretation. Specialty testing can be useful in selected situations, but accuracy and clinical validation matter.
    • Patients with complex symptoms deserve compassionate care. Dr. Cipriano emphasizes persistence, communication, and continued investigation when appropriate.

    About This LIVE from ILADS Interview

    This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

    Rich welcomes Dr. Pamela Cipriano back to Tick Boot Camp for a discussion about neurological Lyme disease, persistent seizures, suspected autoimmune encephalitis, tick-borne co-infections, diagnostic challenges, and medical advocacy.

    The interview also explores the professional pressures facing Lyme disease practitioners and Dr. Cipriano's efforts to expand education through ILADS.

    Explore more interviews with healthcare professionals, researchers, and advocates through Tick Boot Camp's LIVE from ILADS podcast series.

26. Episode 605: Lyme Disease, Immune Dysfunction & Hidden Environmental Bacteria – Jacki Meinhardt | LIVE from ILADS

    20.10.202615 Min.Staffel 1 · Folge 605Als Nächstes

    Could overlooked environmental bacteria, immune dysfunction, and mitochondrial health help explain why some Lyme disease patients remain sick despite years of treatment? In this LIVE from ILADS interview, Tick …

    Shownotes

    Could overlooked environmental bacteria, immune dysfunction, and mitochondrial health help explain why some Lyme disease patients remain sick despite years of treatment?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich welcomes back Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC, a nurse practitioner at Amen Clinics in Northern Virginia, to explore the complex relationship between Lyme disease, tick-borne co-infections, environmental exposures, inflammation, and persistent symptoms.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why some patients struggle to improve after seeing numerous healthcare professionals—and why listening, comprehensive evaluation, and patient-centered care are so important.

    Jacki discusses medical gaslighting, the growing recognition of Anaplasma and Ehrlichia infections, cardiovascular complications of tick-borne diseases, and an often-overlooked environmental concern: actinomycetes, a group of bacteria that can be found in indoor environments.

    She also previews her work on mitochondrial medicine, including cellular energy production, NAD metabolism, inflammation, and the possible relationship between mitochondrial dysfunction and chronic fatigue.

    Throughout the interview, Jacki emphasizes a principle that resonates deeply with the Lyme disease community: Patients deserve to be heard, believed, and thoroughly evaluated—even when their symptoms remain unexplained.

    Meet Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC

    Jacquelyn “Jacki” Meinhardt is a doctorally prepared, board-certified family nurse practitioner whose clinical interests include neuroinflammation, immune dysfunction, tick-borne infections, environmental illness, and complex chronic health conditions.

    At the time of this interview, she had worked at Amen Clinics in Northern Virginia, outside Washington, D.C., for approximately four years.

    Jacki also teaches at Georgetown University, bringing her clinical and academic experience to discussions about medical education and emerging research.

    During the interview, she shares that she had been nominated for the ILADS Board of Directors.

    Since this conversation was recorded, Jacki has joined the ILADS Board, becoming its first nurse practitioner board member.

    Her involvement reflects her interest in expanding interdisciplinary collaboration, improving education, and helping healthcare professionals better understand patients with complex chronic illnesses.

    Learn more about her work through her Amen Clinics professional profile.

    Why Some Patients Remain Sick After Seeing 20 Doctors

    Jacki explains that many patients arrive at Amen Clinics after extensive medical journeys.

    Some have consulted as many as 20 healthcare professionals, including functional medicine practitioners, without achieving meaningful improvement.

    They may have undergone numerous laboratory tests, received multiple diagnoses, and tried different treatment plans.

    Rather than immediately recommending another intervention, Jacki begins by asking questions.

    She reviews previous testing, medical history, symptoms, treatment responses, and possible environmental exposures.

    Her goal is to identify what may have been overlooked.

    She also emphasizes the importance of treatment sequencing.

    Sometimes patients have received several reasonable recommendations, but Jacki believes the order in which interventions are introduced may affect how well they tolerate or respond to care.

    Her approach focuses on understanding the individual patient's circumstances rather than automatically adding more treatments.

    Medical Gaslighting, Medical Trauma, and the Power of Being Believed

    One of the most meaningful moments in the interview occurs when Jacki discusses the emotional consequences of prolonged diagnostic uncertainty.

    She describes patients who have repeatedly been told that their test results are normal or that nothing is medically wrong.

    After years of symptoms and unsuccessful treatments, some become fearful that another healthcare professional will dismiss their concerns.

    Jacki describes this experience as a form of medical trauma.

    She explains that one of the first things she tells patients is:

    “I believe you.”

    That reassurance can help patients feel safe enough to share their experiences and participate in a productive medical conversation.

    Rich asks whether medical gaslighting always involves intentional dismissal or whether some situations reflect limitations in medical education and diagnostic tools.

    Jacki emphasizes education rather than assigning blame.

    She believes healthcare professionals can improve patient care by communicating more effectively, remaining curious, and recognizing the limitations of their knowledge.

    The discussion reinforces an important message: Unexplained symptoms are still real symptoms, and patients deserve compassionate medical attention.

    Immune Dysfunction: Finding Common Ground Across Medical Specialties

    Jacki explains that she frequently uses the term immune dysfunction when communicating with clinicians who may be unfamiliar with some of the terminology used in Lyme disease and environmental medicine.

    Rather than beginning with a discussion of Borrelia, Bartonella, Babesia, mold, or other specific organisms, she focuses on how the immune system may be functioning.

    She believes this approach creates opportunities for collaboration across medical specialties.

    Jacki also discusses how the COVID-19 pandemic increased public awareness of immune responses, inflammation, and cytokines.

    She views the resulting research and medical conversations as opportunities to improve understanding of other complex illnesses.

    However, immune dysfunction is a broad concept, not a single diagnosis. Specific immune disorders require appropriate clinical evaluation, and not every chronic symptom is caused by an abnormal immune response.

    Lyme Disease Co-Infections: Beyond Borrelia, Bartonella, and Babesia

    Rich asks Jacki whether she is seeing changes in the types of infections identified among patients with Lyme disease.

    He describes Tick Boot Camp's observations of patients reporting combinations of Borrelia, Bartonella, and Babesia.

    Jacki explains that she has considered multiple tick-borne infections in her clinical evaluations for many years.

    She also discusses other pathogens that may be relevant depending on a patient's symptoms and exposure history.

    These include:

    • Borrelia: Bacteria responsible for Lyme disease and certain relapsing fever illnesses
    • Babesia: Parasites that infect red blood cells and cause babesiosis
    • Bartonella: Bacteria associated with several human diseases
    • Anaplasma: Bacteria responsible for anaplasmosis
    • Ehrlichia: Bacteria responsible for ehrlichiosis
    • Rickettsia: Bacteria associated with spotted fever illnesses, including Rocky Mountain spotted fever

    Jacki reports encountering more Anaplasma and Ehrlichia in her practice over the preceding two years.

    She acknowledges that she cannot determine whether this reflects changing infection patterns, improved diagnostic testing, or increased clinical awareness.

    Her experience highlights the importance of considering other tick-borne infections when a patient's history and symptoms warrant investigation.

    It does not mean that every person with Lyme disease has multiple infections.

    Cardiovascular Symptoms and Tick-Borne Disease

    Jacki discusses her interest in cardiovascular and circulatory health.

    She explains that when evaluating patients with certain cardiac abnormalities, she considers whether an infectious disease could be contributing to their symptoms.

    The conversation includes heart block, atrial fibrillation, and tick-borne infections that may require further investigation.

    Lyme carditis is a recognized complication of Lyme disease that can disrupt electrical signaling in the heart.

    Other tick-borne infections may also produce serious systemic complications.

    Jacki emphasizes reviewing which infections have already been investigated and whether additional testing is appropriate.

    New chest pain, fainting, significant palpitations, or suspected heart block require prompt medical attention.

    For another discussion of Lyme disease's neurological and cardiovascular effects, explore Tick Boot Camp's interview with Dr. Medeya Tsnobiladze.

    Environmental Actinomycetes: Could There Be More Than Mold in Water-Damaged Buildings?

    One of the most distinctive parts of this interview focuses on environmental actinomycetes.

    Jacki explains that patients investigating building-related health concerns frequently focus on mold.

    However, she believes certain bacteria present in indoor environments deserve additional attention.

    Actinomycetes are a diverse group of bacteria found in soil, water, and other environments. Some are also normal members of the human microbiome.

    Jacki discusses how these organisms can enter buildings through shoes, clothing, pets, and ordinary outdoor exposure.

    She explains that moisture and environmental conditions may influence microbial growth.

    Her clinical interest includes evaluating possible environmental exposures in patients with persistent symptoms and complex medical histories.

    Actinomycetes, Biofilms, and Indoor Environments

    Jacki describes actinomycetes as organisms capable of contributing to biofilm formation under certain conditions.

    She discusses how investigating bacterial contamination may differ from evaluating fungal contamination.

    She also references research she reports publishing with Dr. Ritchie Shoemaker in 2019 concerning environmental organisms and chronic inflammatory illness.

    According to Jacki, understanding these exposures may help clinicians investigate cases where patients continue experiencing symptoms after addressing suspected mold problems.

    She also describes considering culture results from different body sites when evaluating selected patients.

    Scientific context: The presence of actinomycetes in a building or clinical sample does not automatically establish that they are causing illness. Their proposed role in chronic inflammatory conditions remains under investigation, and laboratory findings require careful interpretation.

    Mold, Environmental Testing, and Chemical Sensitivities

    Jacki explains that she considers the patient's broader environment when reviewing complicated cases.

    Homes, schools, and workplaces can have different environmental conditions, including moisture problems, microbial contamination, and other potential exposures.

    Some patients arrive with previous environmental testing results that may need further interpretation.

    Jacki believes clinicians should review these findings alongside medical history and symptoms rather than assuming a single exposure explains every health problem.

    She also discusses how certain patients report sensitivity to fragrances or cleaning products.

    For these individuals, she emphasizes considering cleaning methods and product tolerability when developing practical recommendations.

    The conversation illustrates the importance of investigating documented environmental problems without assuming that every detected organism represents a health hazard.

    Mitochondrial Medicine: Understanding Energy Production and Chronic Fatigue

    Near the end of the interview, Jacki reveals that she is preparing to present on mitochondrial medicine at ILADS.

    Mitochondria are cellular structures responsible for producing much of the energy used by the body.

    Jacki is interested in how energy metabolism may relate to inflammation, vascular health, and persistent symptoms.

    Her presentation explores:

    • Mitochondrial function and cellular energy production
    • The Krebs cycle
    • Pyruvate and lactate metabolism
    • NAD and its role in cellular processes
    • Endothelial function and blood vessel health
    • Inflammatory signaling and metabolic changes

    Rich connects this discussion to the profound fatigue frequently reported by people living with Lyme disease.

    Jacki believes research into cellular energy pathways may help clinicians better understand some aspects of complex chronic illness.

    However, fatigue has many possible causes. It cannot automatically be attributed to mitochondrial dysfunction, and research into energy metabolism does not establish that NAD supplementation or other mitochondrial therapies treat Lyme disease.

    Why Medical Education Must Evolve Faster

    Jacki expresses frustration that new research findings can take years to reach everyday clinical practice.

    She believes physicians, nurse practitioners, physician assistants, and other healthcare professionals need opportunities to learn about emerging evidence more quickly.

    Her involvement with ILADS reflects that commitment to continuing education.

    Rich agrees that greater collaboration between clinicians, researchers, and advocates can improve awareness and patient care.

    Their conversation emphasizes the importance of evaluating new research carefully while helping healthcare professionals remain informed about developments relevant to complex chronic illness.

    Key Takeaways

    • Patients deserve validation. Jacki emphasizes listening carefully to people who have experienced years of medical dismissal.
    • Complex cases require comprehensive evaluation. Reviewing medical history, previous testing, and environmental exposures may reveal overlooked information.
    • Immune dysfunction is an important area of investigation. Understanding specific immune abnormalities requires appropriate medical assessment.
    • Tick-borne infections extend beyond Lyme disease. Jacki discusses Babesia, Bartonella, Anaplasma, Ehrlichia, and other infections.
    • Cardiovascular symptoms warrant careful attention. Certain tick-borne infections can cause serious cardiac complications.
    • Environmental actinomycetes are an emerging research topic. Their proposed relationship with chronic inflammatory illness requires further validation.
    • Mitochondrial health may provide insights into persistent fatigue. Research into cellular energy metabolism continues to evolve.
    • Medical education can help improve care. Jacki advocates for collaboration, research awareness, and better communication across specialties.

    About This LIVE from ILADS Interview

    This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

    Rich welcomes Jacquelyn “Jacki” Meinhardt, DNP, FNP-BC, back to Tick Boot Camp to discuss Lyme disease, immune dysfunction, environmental actinomycetes, and mitochondrial medicine.

    During the interview, Jacki discusses her nomination to the ILADS Board of Directors. She has since joined the board, becoming its first nurse practitioner member.

    Explore more conversations with physicians, researchers, and advocates through Tick Boot Camp's LIVE from ILADS interview series.

27. Episode 604: Lyme 3.0: Beyond Killing Infections to Healing the Body – Dr. Todd Maderis | LIVE from ILADS

    19.10.202623 Min.Staffel 1 · Folge 604Als Nächstes

    What if treating Lyme disease is only part of the recovery process—and the next frontier is helping the body repair the damage left behind? In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits …

    Shownotes

    What if treating Lyme disease is only part of the recovery process—and the next frontier is helping the body repair the damage left behind?

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Dr. Todd Maderis, ND, founder of Marin Natural Medicine Clinic in Northern California, to explore what he calls “Lyme 3.0”—an evolving approach to complex chronic illness that looks beyond infections to consider immune function, environmental exposures, cellular repair, and long-term recovery.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores why some patients continue experiencing fatigue, brain fog, and neurological symptoms even after receiving treatment for Lyme disease and associated infections.

    Dr. Maderis discusses the challenges of diagnosing multiple tick-borne infections, the possible roles of mold exposure and heavy metals, the relationship between long COVID and viral reactivation, and how his approach to treating complex chronic illness has evolved since 2012.

    The interview also examines emerging diagnostic technologies, including testing from IGeneX, T-Lab, and Galaxy Diagnostics, along with Babesia, Bartonella, alpha-gal syndrome, and practical strategies for preventing tick bites.

    His central message: Recovery may require more than identifying and treating infections. For some patients, understanding the factors contributing to persistent symptoms and supporting rehabilitation may be equally important.

    Meet Dr. Todd Maderis, ND

    Dr. Todd Maderis, ND is the founder and medical director of Marin Natural Medicine Clinic in Marin County, California, just north of San Francisco.

    He began focusing on Lyme disease and tick-borne infections in 2012.

    Over time, his practice expanded to include patients with complicated medical histories involving several overlapping health conditions.

    His areas of clinical interest include:

    • Lyme disease, Babesia, Bartonella, and other tick-borne infections
    • Mold-related illness and environmental exposures
    • Mast cell activation syndrome (MCAS)
    • Chronic viral infections, including Epstein-Barr virus (EBV)
    • Long COVID
    • Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
    • Autoimmune conditions
    • Persistent fatigue, pain, and cognitive symptoms

    Dr. Maderis explains that his approach has evolved as he has encountered patients with increasingly complicated combinations of symptoms and diagnoses.

    He also shares research and educational information through social media to help patients better understand emerging developments in complex chronic illness.

    What Is Lyme 3.0?

    One of the most compelling parts of this conversation is Dr. Maderis's explanation of how Lyme disease treatment has evolved.

    He describes three stages in the development of his clinical thinking.

    Lyme 1.0: Focusing on the Infection

    Early treatment approaches primarily emphasized identifying and treating the infectious organisms responsible for Lyme disease and associated conditions.

    Dr. Maderis explains that clinicians initially focused heavily on reducing the infectious burden.

    Antimicrobial treatment remains essential when a patient has an active infection requiring treatment.

    However, he began questioning whether infection-focused interventions alone could explain every patient's ongoing symptoms.

    Lyme 2.0: Recognizing Additional Health Conditions

    As his practice evolved, Dr. Maderis increasingly evaluated patients for other medical problems occurring alongside tick-borne infections.

    These included mold-related concerns, mast cell activation syndrome, chronic viral infections, and autoimmune conditions.

    He describes learning about mold-related illness at an ILADS conference around 2013 as a turning point in his clinical career.

    That presentation encouraged him to consider environmental exposures in patients whose symptoms were not fully explained by their existing diagnoses.

    Lyme 3.0: Recovery, Repair, and Rehabilitation

    Dr. Maderis believes the next stage involves understanding what patients may need after appropriate treatment of infections and other identified medical conditions.

    He points to people who continue experiencing symptoms such as:

    • Persistent fatigue
    • Brain fog and cognitive difficulties
    • Reduced physical endurance
    • Neurological complaints
    • Difficulty returning to previous activities

    He discusses cellular and mitochondrial health as areas of interest when considering why some patients struggle to regain their previous level of functioning.

    His concept of Lyme 3.0 emphasizes the importance of rehabilitation and recovery rather than viewing treatment exclusively as an effort to eliminate pathogens.

    This is Dr. Maderis's framework, not an established medical classification or a validated treatment protocol. Persistent symptoms after Lyme disease treatment can have multiple causes and require individualized medical evaluation.

    Why Some Lyme Patients Have Multiple Contributing Health Problems

    Rich asks Dr. Maderis why clinicians appear to be identifying more complicated cases involving several infections or overlapping medical conditions.

    Dr. Maderis believes several developments may be contributing to this observation.

    Diagnostic technologies have evolved, clinicians have become more aware of tick-borne co-infections, and geographic patterns of tick exposure continue to change.

    He also discusses environmental exposures and the possible effects of other illnesses on immune function.

    Dr. Maderis groups the factors he considers into three broad categories:

    Infectious factors: Tick-borne infections and other clinically relevant infectious diseases.

    Environmental factors: Mold exposure, toxic metals, and other exposures that may warrant investigation.

    Traumatic factors: Physical injuries, including head trauma, and psychological stress or trauma that may affect health and recovery.

    He explains that some patients arrive with several potential contributing conditions rather than one straightforward diagnosis.

    His challenge is determining which findings are clinically significant and which require treatment.

    The conversation highlights why complex cases benefit from careful differential diagnosis rather than assuming every symptom has the same underlying cause.

    Lyme Disease, Long COVID, and Epstein-Barr Virus Reactivation

    Rich and Dr. Maderis discuss whether COVID-19 can influence previously controlled infections.

    Dr. Maderis references research investigating the relationship between SARS-CoV-2 infection, immune changes, and Epstein-Barr virus reactivation.

    Some studies have identified associations between EBV reactivation markers and long COVID.

    He raises the possibility that changes in immune function following COVID-19 could also affect other infections.

    However, the extent to which SARS-CoV-2 may cause reactivation of Borrelia infection remains uncertain.

    The discussion illustrates an important research question: How do multiple infections and immune responses interact in patients experiencing prolonged symptoms?

    Dr. Maderis believes clinicians should remain aware of emerging findings while recognizing that the science continues to develop.

    Why a Positive Lyme Antibody Test Doesn't Always Mean Active Infection

    Rich and Dr. Maderis discuss the distinction between detecting an infection and detecting evidence of a previous immune response.

    Antibody tests measure the immune system's response to an organism rather than directly identifying whether that organism is currently present.

    Antibodies against Borrelia can remain detectable for months or years after successful treatment.

    This means a positive antibody test does not necessarily establish an active infection.

    Conversely, testing early in an infection can produce negative results before detectable antibodies have developed.

    Dr. Maderis believes clinicians must interpret results alongside symptoms, medical history, exposure risk, and other clinical findings.

    This distinction is particularly important for patients who undergo repeated testing while trying to understand persistent symptoms.

    Advanced Lyme Disease and Co-Infection Testing

    Dr. Maderis explains that he uses several specialty laboratories when evaluating patients for Lyme disease and associated infections.

    He discusses how different testing methods may provide different types of information.

    IGeneX: Lyme Disease and Co-Infection Panels

    Dr. Maderis describes IGeneX as one of the foundational laboratories he uses when evaluating patients for tick-borne infections.

    The laboratory offers testing for Lyme disease and several associated infections.

    He explains that he frequently orders comprehensive panels during initial evaluations when the patient's history supports investigation for multiple tick-borne pathogens.

    T-Lab: Direct Detection Methods

    Dr. Maderis also discusses T-Lab, which uses specialized microscopy and molecular methods intended to detect organisms more directly.

    He contrasts these methods with antibody-based testing.

    The potential advantage of direct detection is that it attempts to identify evidence of the organism rather than relying solely on the patient's antibody response.

    However, the diagnostic accuracy, clinical validation, and appropriate use of individual specialty tests must be evaluated carefully.

    Galaxy Diagnostics: Bartonella Testing

    Dr. Maderis identifies Galaxy Diagnostics as another laboratory he uses, particularly when investigating Bartonella infection.

    He discusses the laboratory's expanded Bartonella testing methods and describes a patient whose infection was detected after earlier testing through other laboratories had been negative.

    This experience reinforced his belief that different testing methods may sometimes produce different findings.

    For a deeper exploration of Bartonella diagnostics, Tick Boot Camp previously interviewed Nicole Bell of Galaxy Diagnostics about the challenges of detecting tick-borne infections.

    No single test can definitively diagnose or exclude every tick-borne disease. Patients should work with qualified clinicians to determine which tests are appropriate and how results should be interpreted.

    Mold Exposure, Mycotoxins, and Chronic Illness

    Dr. Maderis explains that environmental medicine became an increasingly important part of his practice after attending an ILADS presentation on mold-related illness.

    He now considers environmental exposures when evaluating selected patients with complicated symptoms.

    The interview distinguishes between investigating a patient's environment and assessing possible exposures within the body.

    Testing the Home for Mold

    When a patient's history suggests possible mold exposure, Dr. Maderis may recommend an initial home screening.

    Depending on the findings, he may suggest a more thorough evaluation by a qualified environmental professional.

    The conversation emphasizes identifying possible sources of exposure rather than relying exclusively on medical testing.

    Urine Mycotoxin Testing

    Dr. Maderis explains that he uses urine mycotoxin testing in his practice.

    Mycotoxins are substances produced by certain molds, and exposure can occur through different environmental and dietary sources.

    However, the clinical usefulness of urine mycotoxin testing for diagnosing mold-related illness remains uncertain. Such tests are not established as reliable diagnostic tools for determining whether a person's symptoms are caused by indoor mold exposure.

    A comprehensive assessment should consider exposure history, environmental conditions, symptoms, and established medical diagnoses.

    Heavy Metals, Immune Function, and Environmental Testing

    Dr. Maderis also discusses exposure to toxic metals, particularly lead and mercury.

    He explains that certain metals can remain in the body long after an exposure has ended.

    Lead and mercury can produce significant health effects, including neurological and other systemic complications.

    Dr. Maderis considers these exposures when a patient's history or symptoms suggest they may be relevant.

    He also acknowledges an important limitation: clinicians cannot routinely test for every chemical encountered in the environment.

    The discussion reinforces the importance of selecting tests based on credible exposure history and established clinical indications.

    Suspected toxic metal exposure should be evaluated using validated testing methods. Unnecessary testing or unproven detoxification treatments can create additional risks.

    Babesia on the East Coast and West Coast

    Rich asks Dr. Maderis whether he has noticed changes in Babesia infections among his California patients.

    Dr. Maderis explains that clinicians historically associated Babesia microti more strongly with the eastern United States and Babesia duncani with the West Coast.

    However, he believes geographic assumptions can be misleading.

    He reports encountering different Babesia species in his practice and mentions growing clinical interest in Babesia odocoilei.

    Rich shares that he has also observed more Babesia-related concerns in the Lyme disease community on Long Island.

    Their discussion highlights the importance of considering geography, travel history, tick exposure, and appropriate diagnostic methods.

    Babesiosis is a potentially serious tick-borne disease, particularly for older adults and people with weakened immune systems.

    The geographic distribution and human disease significance of individual Babesia species vary, and emerging laboratory findings should not be confused with established population-level prevalence data.

    Alpha-Gal Syndrome and the Lone Star Tick

    The conversation shifts to alpha-gal syndrome, a potentially serious allergic condition associated with sensitization to a sugar molecule called alpha-gal.

    In the United States, alpha-gal syndrome is strongly associated with bites from lone star ticks.

    Affected individuals may experience delayed allergic reactions after consuming certain mammalian meat products or encountering other alpha-gal-containing substances.

    Dr. Maderis explains that he had not encountered a confirmed case in his California practice at the time of the interview.

    Rich contrasts that experience with the prevalence of lone star ticks on Long Island and in other parts of the eastern United States.

    They also discuss reports of alpha-gal syndrome on Martha's Vineyard and the possibility of changing tick distributions.

    Because alpha-gal syndrome can cause severe allergic reactions, suspected cases should be evaluated by an appropriately qualified healthcare professional.

    Could Genetically Modified Mice Help Prevent Lyme Disease?

    Rich asks Dr. Maderis about a proposed strategy involving genetically modified mice on Martha's Vineyard.

    The idea involves altering the relationship between mice, ticks, and Borrelia bacteria to potentially reduce the transmission of Lyme disease.

    Mice are important reservoir hosts for certain tick-borne pathogens, making them a focus of disease-prevention research.

    Dr. Maderis expresses concern about introducing genetically modified animals into the environment.

    He favors emphasizing established prevention strategies and public education.

    This exchange illustrates the broader debate surrounding emerging environmental approaches to reducing tick-borne disease risk.

    Potential ecological interventions require careful scientific evaluation, environmental oversight, and community engagement.

    How to Perform a Thorough Tick Check

    The interview concludes with one of its most practical discussions: preventing tick bites.

    Dr. Maderis and Rich agree that regular tick checks are an important part of reducing exposure to tick-borne diseases.

    Rich explains that he checks himself twice daily and emphasizes the importance of using both sight and touch.

    Dr. Maderis recommends examining the entire body after outdoor activities, particularly when spending time in wooded, grassy, or other tick-prone environments.

    Important areas to inspect include:

    • Behind the knees
    • Under the arms
    • Around the waist and groin
    • Behind and inside the ears
    • Along the scalp and hairline
    • Around the back and other hard-to-see areas

    Children may need help from a parent or caregiver, while adults can benefit from a partner checking areas they cannot easily inspect.

    A shower after outdoor exposure can help remove unattached ticks and provides an opportunity for a thorough examination.

    Rich also describes using his fingertips to feel for small attached ticks that might be difficult to see.

    If you find an attached tick, remove it promptly with fine-tipped tweezers, grasping it close to the skin and pulling upward with steady pressure.

    For a step-by-step guide to prevention, removal, and what to do after a bite, explore the Tick Boot Camp Tick Bite Blueprint.

    Key Takeaways

    • Lyme 3.0 emphasizes recovery and repair. Dr. Maderis believes some patients need additional evaluation and rehabilitation after treatment of identified infections.
    • Complex chronic illness may involve overlapping conditions. Tick-borne infections, environmental exposures, and other diagnosed medical problems can complicate evaluation.
    • Long COVID and viral reactivation remain important research topics. Their relationship with persistent symptoms continues to be investigated.
    • Testing methods have different strengths and limitations. Dr. Maderis discusses antibody-based testing, direct detection, and specialty laboratories.
    • Mold and toxic metal exposures warrant evidence-based assessment. Testing should be guided by medical history and validated methods.
    • Babesia and alpha-gal syndrome deserve greater awareness. Tick-borne health risks vary by geography and exposure.
    • Persistent symptoms deserve careful evaluation. Continued fatigue or cognitive difficulties do not automatically establish ongoing infection.
    • Prevention remains essential. Regular tick checks and prompt tick removal can reduce the risk of tick-borne illness.

    About This LIVE from ILADS Interview

    This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

    Rich interviews Dr. Todd Maderis about his evolving approach to Lyme disease and complex chronic illness, including infection-focused treatment, environmental medicine, diagnostic testing, and rehabilitation.

    The discussion also explores the changing landscape of tick-born

28. Episode 603: Beyond the Lyme Clinic: Herbal Medicine, Education & Advocacy – Dr. Myriah Hinchey | LIVE from ILADS

    18.10.202617 Min.Staffel 1 · Folge 603Als Nächstes

    What happens when a Lyme disease doctor realizes she can only help so many patients in her office—but millions of people need better information, more treatment options, and access to knowledgeable healthcare …

    Shownotes

    What happens when a Lyme disease doctor realizes she can only help so many patients in her office—but millions of people need better information, more treatment options, and access to knowledgeable healthcare professionals?

    For Dr. Myriah Hinchey, ND, the answer has been to build something bigger than her medical practice.

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich reconnects with Dr. Hinchey to discuss how she is expanding Lyme disease education and patient support through her Connecticut naturopathic practice, LymeCore Botanicals, the LymeBytes Symposium, and a new educational course.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, their conversation explores herbal medicine for Lyme disease and co-infections, integrative approaches to complex chronic illness, the importance of continuing medical education, and the challenges of making specialized healthcare accessible.

    Dr. Hinchey also shares why she created her own botanical medicine company, how her conference connects patients with nonprofit organizations and healthcare professionals, and why she believes education can reach people who may never be able to schedule an appointment with her.

    The conversation raises an important question: How can one healthcare professional help thousands of people without personally treating every patient?

    Meet Dr. Myriah Hinchey, ND

    Dr. Myriah Hinchey is a Connecticut-licensed naturopathic physician specializing in Lyme disease, tick-borne infections, and complex chronic illness.

    She is the medical director of TAO: Center for Vitality, Longevity & Optimal Health in Hebron, Connecticut.

    Her clinical work focuses on patients experiencing complicated, often infection-associated health problems.

    During the interview, Dr. Hinchey explains that her multidisciplinary practice includes:

    • Naturopathic medicine
    • Lyme-informed psychotherapy
    • Acupuncture
    • Massage therapy
    • Support for patients with complex chronic illness

    She works alongside fellow naturopathic physician Dr. Marisa Hauser, who also focuses on Lyme disease, co-infections, and related health concerns.

    Beyond her clinical practice, Dr. Hinchey is the founder of LymeCore Botanicals and LymeBytes, an educational platform that brings together healthcare professionals, patients, researchers, and advocacy organizations.

    Her professional work reflects a philosophy of combining individualized patient care with broader educational initiatives intended to reach the Lyme disease community.

    Why Dr. Hinchey Continues Attending ILADS

    Rich begins by asking why Dr. Hinchey regularly participates in ILADS conferences.

    Her answer centers on the importance of continuous learning.

    Even though her clinical approach may differ from those of other practitioners, she believes healthcare professionals need to understand emerging research and the treatments their colleagues are using.

    She explains that patients frequently arrive having already tried different protocols or therapies.

    Understanding those approaches allows clinicians to evaluate previous treatments, identify potential problems, and make more informed recommendations.

    Dr. Hinchey also believes no practitioner has every answer.

    Even after years of clinical experience, she says she regularly learns something new from educational presentations that helps her reconsider a difficult patient case.

    For her, attending conferences is not simply about learning new protocols. It is about expanding the clinical knowledge available to patients who have complicated medical histories.

    Why She Created LymeCore Botanicals

    One of the most interesting parts of this interview is the origin of LymeCore Botanicals, the herbal medicine company Dr. Hinchey co-founded.

    She explains that the business began more than a decade before this interview because she was frustrated by inconsistent access to the medicinal herbs she used in her practice.

    Her primary concern was supply reliability.

    When a clinician develops an individualized treatment plan using botanical products, inconsistent availability can make it difficult to maintain that plan.

    Dr. Hinchey wanted greater confidence in the sourcing, purity, potency, and consistency of the herbs available to her patients.

    Over time, the project expanded into developing formulations based on her clinical experience and treatment philosophy.

    What began as a practical solution for her own patients eventually grew into a resource used by other healthcare professionals.

    The Role of Herbal Medicine in Her Clinical Approach

    Dr. Hinchey discusses botanical medicine as one component of her integrative approach to Lyme disease and co-infections.

    She believes herbal formulations may play a role in addressing different aspects of complex chronic illness, including infection-related concerns and broader physiological dysfunction.

    Her approach emphasizes considering the patient's overall condition rather than focusing exclusively on antimicrobial treatment.

    However, herbal products vary considerably in their ingredients, quality, evidence, and potential risks.

    Some botanical compounds have demonstrated antimicrobial activity in laboratory studies, but these findings do not establish that herbal protocols can cure Lyme disease in humans.

    Patients should review supplements with qualified healthcare professionals, particularly when taking prescription medications or managing complicated medical conditions.

    The LymeBytes Symposium: Bringing the Lyme Community Together

    Dr. Hinchey explains that she created LymeBytes after discovering that nonprofit organizations were helping patients pay for treatment, yet many people—including experienced clinicians—did not know those resources existed.

    She wanted to create an event that would connect several important parts of the Lyme disease community.

    Her vision included three major goals.

    1. Connect patients with nonprofit resources

    Dr. Hinchey wanted organizations providing financial assistance, education, and other support to become more visible to people who might benefit from their services.

    She also wanted to create opportunities to raise money for these organizations.

    2. Provide practical medical education

    Rather than focusing exclusively on research presentations, she wanted clinicians to leave with information they could apply in practice.

    Her goal was to bring together experienced speakers who could discuss clinical approaches, patient management, and emerging treatment considerations.

    3. Introduce patients and practitioners to additional resources

    The symposium includes companies and organizations involved in diagnostic testing, nutritional supplements, and complementary interventions.

    Dr. Hinchey mentions hyperbaric oxygen therapy, red light therapy, far-infrared saunas, and other supportive modalities as examples of topics represented at the event.

    These therapies have varying levels of scientific support and should not be assumed to be effective treatments for Lyme disease.

    From a Lyme Conference to a Broader Chronic Illness Symposium

    Dr. Hinchey explains that LymeBytes initially focused on Lyme disease and associated tick-borne infections.

    Over time, she expanded its educational scope to address other complex health conditions and overlapping symptom presentations.

    These include:

    • Long COVID
    • Mold-related illness
    • PANS and PANDAS
    • Immune system dysfunction
    • Complex chronic infection-associated conditions
    • Neurological and inflammatory symptoms

    She believes clinicians benefit from examining these conditions together because some patients experience overlapping symptoms or multiple diagnoses.

    The symposium is designed for healthcare professionals as well as patients who want to become more informed participants in their medical care.

    2026 event update: The next LymeBytes Symposium is scheduled for November 13–14, 2026, in the Fort Lauderdale/Pompano Beach area of Florida, with in-person and virtual attendance options.

    Why Education Matters When Doctors Have Long Waiting Lists

    Rich raises a challenge that affects many patients seeking specialized Lyme disease care: limited access to experienced practitioners.

    Dr. Hinchey shares that her practice once had a waiting list approximately 18 months long.

    She recalls receiving angry messages from people frustrated that they could not schedule an appointment sooner.

    While she understood their desperation, she also recognized that she could not personally treat everyone who needed help.

    She has a family and responsibilities outside her medical practice.

    Even working longer hours would not solve the broader problem of limited specialist availability.

    Rich uses her experience to explore how healthcare professionals can serve people beyond traditional appointments.

    Instead of relying exclusively on one-on-one care, clinicians can share knowledge through conferences, podcasts, educational courses, books, and other resources.

    These formats allow information to reach people who live far away, cannot afford specialized consultations, or face lengthy appointment delays.

    Although educational resources cannot replace individualized medical care, they can help patients prepare questions, understand available options, and seek appropriate evaluations.

    Reaching Patients Through Podcasts and Online Summits

    Dr. Hinchey explains that she participates in podcasts and educational events because she wants to reach people who are still searching for explanations for their symptoms.

    She describes her involvement in two Healing Lyme Summit events through DrTalks.

    At the time, she already had more demand for appointments than her practice could accommodate.

    Her motivation for participating was not to attract additional patients.

    Instead, she hoped someone listening might recognize a relevant symptom pattern or learn about an avenue of medical evaluation they had not previously considered.

    She believes accessible education can encourage patients to ask better questions and seek appropriate clinical assessments.

    The conversation also addresses the limitations of relying on a single laboratory result when evaluating complex symptoms.

    Lyme disease testing must be interpreted according to the timing of infection, exposure history, clinical presentation, and the characteristics of the test being used.

    Educational programs can help patients understand these considerations, but they cannot establish a diagnosis or replace qualified medical assessment.

    Treating the Whole Patient: Beyond Antimicrobial Protocols

    Dr. Hinchey describes her approach as rooted in functional and naturopathic medicine.

    She believes complex chronic illness requires attention to more than the presence of an infectious organism.

    During the conversation, she discusses the importance of understanding physiological processes that may influence a patient's symptoms and response to treatment.

    These include immune function, inflammation, and other factors affecting overall health.

    She also discusses how her conference has evolved to explore possible interactions among tick-borne infections, environmental exposures, and other chronic health concerns.

    Her perspective is that clinicians should consider the broader medical picture rather than assuming every patient needs the same intervention.

    While comprehensive evaluation can be valuable, proposed mechanisms and treatment strategies should be assessed according to available scientific evidence.

    Established Lyme disease treatment recommendations remain important, and complementary interventions should not replace appropriate antimicrobial therapy when indicated.

    Why Medical Professionals Need to Keep Learning

    A central theme of this conversation is professional humility.

    Dr. Hinchey explains that even when she has heard a speaker present many times, she may learn something that changes how she thinks about a difficult case.

    She personally selects speakers for LymeBytes based on the topics she believes clinicians and patients need to understand.

    Her goal is to identify knowledgeable presenters who can share clinically relevant information.

    She also recognizes that medical knowledge continues to evolve.

    New research, diagnostic tools, and treatment approaches create opportunities for clinicians to reassess established practices.

    Rich agrees but adds another dimension: healthcare professionals should also learn how to communicate their knowledge effectively.

    He argues that sharing expertise through education can help more people than relying exclusively on direct clinical services.

    Their discussion highlights an opportunity for medical professionals to extend the reach of their experience while continuing to prioritize patient care.

    Building an Educational Model That Reaches More People

    Rich introduces the concept of a value ladder to explain how professionals can serve people at different levels of engagement.

    He describes three approaches:

    • Self-directed learning: People use educational resources to build their understanding independently.
    • Guided learning: Patients or professionals participate in courses, conferences, or structured educational programs.
    • Individualized services: Patients receive direct care from a healthcare professional.

    Rich believes Dr. Hinchey has developed a model that incorporates all three.

    Her medical practice provides individualized services, LymeBytes offers structured education, and her podcasts and other resources allow people to learn without becoming patients.

    He encourages other healthcare professionals to consider similar approaches.

    The conversation also addresses a gap in professional training.

    Dr. Hinchey recalls graduating from naturopathic medical school without knowing how to handle important business responsibilities, including insurance billing.

    Rich observes that physicians, lawyers, and other professionals often receive extensive technical education without comparable training in business operations or public communication.

    Both believe these skills can help professionals expand the impact of their work.

    A New Lyme Disease Educational Course

    Near the end of the interview, Dr. Hinchey reveals another project.

    She had been developing an educational course for approximately two and a half years.

    The course is intended for both clinicians and members of the public.

    Her goal is to organize complex information into a more accessible learning experience for people who cannot attend conferences or receive care at her Connecticut practice.

    She explains that her attention to detail and desire to create a comprehensive resource had contributed to delays in completing the project.

    Rich encourages her to prioritize making the information available rather than waiting for perfection.

    He challenges her to release the course by Christmas 2025.

    Dr. Hinchey accepts the challenge with some humor, recognizing that the proposed deadline leaves her only about 10 weeks.

    The course was still in development at the time of this interview. Its current availability should be confirmed through Dr. Hinchey's official channels.

    Rich and Dr. Hinchey discuss the possibility of another Tick Boot Camp interview dedicated to the course and its educational goals.

    Key Takeaways

    • Dr. Myriah Hinchey practices in Hebron, Connecticut, where her multidisciplinary clinic focuses on Lyme disease, co-infections, and complex chronic illness.
    • LymeCore Botanicals began as a solution to inconsistent herbal supply, eventually expanding into a company serving other healthcare professionals.
    • LymeBytes connects patients, clinicians, nonprofits, and educational resources through an annual symposium.
    • Her approach emphasizes integrative care, including consideration of infection-related concerns and broader health factors.
    • Medical education should continue throughout a clinician's career, particularly as research and treatment approaches evolve.
    • Specialist shortages create barriers to care, making accessible educational resources increasingly important.
    • Podcasts, summits, and courses can extend a clinician's reach without requiring every person to become a patient.
    • Dr. Hinchey is developing additional educational resources intended to help clinicians and patients navigate complex chronic illness.

    About This LIVE from ILADS Interview

    This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

    Rich reconnects with Dr. Myriah Hinchey to explore her clinical practice, herbal medicine company, educational conference, and broader mission to improve access to Lyme disease information.

    The interview emphasizes innovation, continuing education, patient empowerment, and the importance of sharing clinical knowledge beyond the walls of a medical office.

    For another in-depth conversation with Dr. Hinchey, listen to Episode 524: From Lyme Patient to Pioneer – an interview with Myriah Hinchey.

    Explore more physician interviews, research discussions, and advocacy conversations through Tick Boot Camp's LIVE from ILADS series.

29. Episode 602: When Lyme Disease Is Misdiagnosed: 12 Stories of Hope – Terri McCormick | LIVE from ILADS

    17.10.202621 Min.Staffel 1 · Folge 602Als Nächstes

    What happens when a child spends 10 years searching for a diagnosis, sees 21 doctors, and continues getting sicker while medical tests come back negative? For author and Lyme disease advocate Terri McCormick …

    Shownotes

    What happens when a child spends 10 years searching for a diagnosis, sees 21 doctors, and continues getting sicker while medical tests come back negative?

    For author and Lyme disease advocate Terri McCormick, this isn't a hypothetical question. It's part of her family's story—and the experience that inspired her to help others navigate the devastating consequences of delayed and missed diagnoses.

    In this LIVE from ILADS interview, Tick Boot Camp co-host Rich sits down with Terri to discuss her book, Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease, which shares 12 real-life stories of people whose illnesses were initially attributed to other medical conditions.

    Recorded at the 2025 International Lyme and Associated Diseases Society (ILADS) Conference in San Antonio, Texas, the conversation explores the limitations of Lyme disease testing, the emotional toll of medical dismissal, neurological and psychiatric symptoms, and the importance of finding knowledgeable healthcare professionals.

    Terri also shares her experiences advocating for two seriously ill daughters, the challenges of navigating multiple medical specialists, and why families need to understand that a negative test doesn't always provide a complete answer.

    At the heart of this conversation is a message for patients and caregivers who feel unheard: Your symptoms deserve to be taken seriously, and you are not alone in searching for answers.

    Meet Terri McCormick: Mother, Author, and Lyme Disease Advocate

    Terri McCormick is an author, speaker, patient advocate, and ILADS Ambassador whose work focuses on improving awareness of Lyme disease and other tick-borne illnesses.

    Her advocacy began when her own children developed serious health problems that remained unexplained for years.

    Terri describes navigating countless appointments, researching possible explanations, and struggling to find physicians who could connect her daughters' seemingly unrelated symptoms.

    What began as a mother's determination to help her children eventually became a broader mission to support families facing similar challenges.

    Today, Terri helps people find educational resources and connect with healthcare professionals experienced in tick-borne diseases.

    She also serves as an Illinois State Co-Leader for the Center for Lyme Action and contributes to LymeDisease.org.

    Her experiences inspired her to write Being Misdiagnosed, a collection of patient stories intended to raise awareness about diagnostic delays and the human consequences of medical uncertainty.

    A Mother's 10-Year Search for Answers

    One of the most emotional parts of this interview is Terri's account of her daughters' illnesses.

    Her older daughter developed increasingly debilitating symptoms, including:

    • Severe, recurring migraines
    • Extreme fatigue and prolonged periods in bed
    • Difficulty walking and dragging her legs
    • Unusual rashes on her hands
    • Significant swelling in her hands
    • Symptoms that fluctuated unpredictably

    Terri explains that repeated Lyme disease tests came back negative.

    Despite her daughter's worsening condition, the family struggled to find a clear explanation.

    Some physicians recommended psychiatric evaluations, leaving Terri frustrated that her daughter's physical symptoms were not being adequately addressed.

    Her younger daughter experienced a different combination of symptoms, including cardiac concerns, skin problems, and similar hand rashes.

    Her illness eventually became so debilitating that she missed approximately 60% of a school year.

    Determined to continue her education, she listened to classroom lectures remotely from bed.

    Terri recalls consulting numerous medical specialists, including neurologists and rheumatologists.

    She describes seeing 21 doctors during the family's search for answers.

    Eventually, the family connected with a practitioner who ordered testing through IGeneX, which Terri says helped establish a Lyme disease diagnosis for one of her daughters.

    Their experience illustrates how difficult it can be for families when symptoms cross multiple medical specialties and no single clinician has a complete picture.

    Why Can Lyme Disease Be Difficult to Diagnose?

    Rich and Terri spend considerable time discussing one of the Lyme community's most persistent concerns: diagnostic uncertainty.

    Many commonly used Lyme disease tests measure antibodies produced by the immune system in response to infection.

    These tests can be useful, but their accuracy depends on several factors, particularly the timing of testing.

    Early in infection, a person may not yet have developed detectable antibodies.

    This means a negative test does not always exclude Lyme disease, especially when symptoms and exposure history strongly suggest an early infection.

    Terri describes her frustration when negative test results became the primary reason clinicians dismissed Lyme disease as a possibility.

    She believes doctors should evaluate the full clinical picture, including symptoms, medical history, possible tick exposure, and appropriate laboratory findings.

    The interview also highlights the challenges associated with interpreting specialized testing and evaluating patients who have been ill for extended periods.

    For additional information about available testing methods and their limitations, explore Tick Boot Camp's Lyme Disease Testing Guide.

    When a Negative Test Becomes a Barrier to Care

    One of Rich's central observations is that negative test results can influence more than medical decisions.

    They can also affect whether patients are believed.

    When a person continues experiencing serious symptoms despite inconclusive testing, they may encounter skepticism from healthcare professionals, family members, employers, or friends.

    Terri explains that this can be especially difficult for people whose symptoms fluctuate.

    Someone may feel well enough to participate in an activity one day but be unable to get out of bed the next.

    Without understanding that symptoms can change over time, others may mistakenly question the severity of the illness.

    Rich and Terri discuss how this dynamic can leave patients feeling isolated, discouraged, and uncertain about their own experiences.

    Their message is that persistent symptoms deserve thoughtful evaluation, even when the initial medical investigation does not produce a clear answer.

    A negative Lyme test does not prove that someone is healthy, but it also does not establish that Lyme disease is the cause of their symptoms. A comprehensive evaluation should consider both tick-borne infections and other possible explanations.

    Being Misdiagnosed: 12 Stories That Reveal the Hidden Epidemic of Lyme Disease

    Terri's book, Being Misdiagnosed: Stories That Reveal the Hidden Epidemic of Lyme Disease, brings together 12 real-life accounts of people who experienced prolonged diagnostic journeys.

    The book explores how symptoms associated with tick-borne illness may overlap with those of other medical conditions.

    Among the diagnoses discussed are:

    • Amyotrophic lateral sclerosis (ALS)
    • Multiple sclerosis (MS)
    • Alzheimer's disease
    • Chronic fatigue syndrome
    • Sleep disorders
    • Psychiatric illnesses, including schizophrenia
    • Other neurological and complex chronic conditions

    Terri hopes the stories will encourage patients, caregivers, and medical professionals to ask additional questions when an illness remains unexplained or a diagnosis does not fully account for someone's symptoms.

    The book also addresses the emotional and social consequences of prolonged illness, including family relationships, medical uncertainty, and the importance of advocacy.

    Publication update: Although Terri discussed a planned January 2026 release during this October 2025 interview, Being Misdiagnosed has since been published and is available through her official website.

    The Story of David: Decades Without Answers

    Terri shares the story of David, one of the individuals featured in her book.

    According to Terri, David began experiencing serious health problems around age 10, when he received a diagnosis of spondylitis.

    As he grew older, his condition continued to deteriorate.

    He underwent repeated medical evaluations, yet his symptoms progressed.

    By age 42, Terri explains, David had accumulated an extensive list of diagnoses and was living with significant chronic illness.

    She wonders whether earlier recognition of an underlying tick-borne infection could have changed the course of his medical journey.

    David's experience raises an important question: What happens when physicians treat individual symptoms and diagnoses without reconsidering whether a broader explanation may be missing?

    His story reflects the book's emphasis on persistence, reevaluation, and the importance of listening to patients whose health continues to decline.

    When Lyme Disease Symptoms Resemble ALS or Other Neurological Conditions

    Another story Terri highlights involves a woman who received an ALS diagnosis.

    According to Terri, the woman was evaluated by neurologists, including specialists at Mayo Clinic, and was given a limited life expectancy.

    Her daughter subsequently researched other possibilities and helped her pursue an evaluation for Lyme disease.

    Terri reports that the woman received a positive Lyme test and underwent treatment.

    She describes substantial improvement, explaining that the woman later returned to working approximately 50 hours per week.

    Terri presents this experience as an example of why patients facing serious diagnoses may benefit from a careful review of their medical histories and potential alternative or coexisting conditions.

    Importantly, this individual story does not establish that Lyme disease causes ALS or that Lyme treatment reverses confirmed ALS. Neurological symptoms can overlap across conditions, and accurate diagnosis requires appropriate specialist evaluation.

    The story illustrates the importance of investigating potentially treatable conditions without assuming that every neurological illness is caused by infection.

    Neuropsychiatric Lyme Disease and Mental Health Symptoms

    Terri also discusses the neurological and psychiatric manifestations that may occur in some people with Lyme disease and other infections.

    While Lyme disease is commonly associated with fatigue, joint pain, and other physical symptoms, certain neurological complications can affect cognition, mood, and nervous system function.

    Terri explains that two stories in her book involve prominent neuropsychiatric symptoms.

    One particularly difficult chapter describes a young man who experienced rapidly worsening psychiatric problems and multiple psychiatric hospitalizations.

    Terri believes the possibility of an underlying infectious illness was not adequately investigated early enough.

    The story is especially painful because it does not have the hopeful outcome described in many of the other chapters.

    Rich connects the discussion to Tick Boot Camp's previous conversations with neuropsychologist Dr. Leo Shea III, whose work includes the cognitive, emotional, and behavioral effects of Lyme disease.

    The interview raises questions about the relationship between infection, inflammation, neurological function, and psychiatric symptoms.

    Certain infections can cause neuropsychiatric complications, but conditions such as schizophrenia, bipolar disorder, and other mental illnesses have multiple possible causes. They should not automatically be attributed to Lyme disease.

    People experiencing new or severe neurological or psychiatric symptoms deserve timely, comprehensive medical evaluation.

    Why Family Support Matters During a Diagnostic Journey

    Rich suggests that one of the most important audiences for Terri's book may be the families of people living with unexplained chronic illness.

    When medical testing is inconclusive, loved ones may struggle to understand why someone remains sick.

    Parents may question a child's symptoms.

    Spouses may become frustrated by unpredictable limitations.

    Friends may withdraw because they do not understand why someone repeatedly cancels plans.

    Terri explains that these experiences can intensify the isolation already associated with chronic illness.

    She hopes her book will help families recognize the emotional burden of searching for answers and encourage them to respond with greater understanding.

    For caregivers, the message is particularly important.

    You do not need to have every medical answer to believe that someone is suffering and deserves support.

    The Power of Community and Lyme Disease Support Groups

    Terri shares that she previously helped run Lyme disease support groups and continues to speak with people searching for information and encouragement.

    She describes how meaningful it can be when someone finally encounters another person who understands their experience.

    For people who have spent years explaining symptoms to skeptical listeners, hearing someone acknowledge what they are going through can provide tremendous relief.

    Terri explains that she regularly receives messages from people asking for guidance.

    Her advocacy often begins by listening.

    The conversation reinforces the importance of patient communities, peer support, and opportunities to connect with people who have navigated similar challenges.

    Support groups cannot replace medical care, but they can help reduce isolation and provide emotional encouragement.

    Why Lyme Disease Is Called the Great Imitator

    Rich and Terri discuss Lyme disease's reputation as the great imitator.

    The phrase reflects the fact that Lyme disease can produce symptoms that overlap with those of other medical conditions.

    These may include neurological, musculoskeletal, constitutional, and, in certain cases, cardiac manifestations.

    The diagnostic challenge becomes greater when symptoms fluctuate, evolve, or affect several body systems.

    Terri's book uses patient experiences to illustrate how complicated these presentations can become.

    Rich also shares a memorable phrase from LymeLight Foundation founder Phyllis Bedford, who described Lyme as the "supermarket disease."

    Her observation was that people sometimes receive more recognition of their symptoms from others in their community than they do during medical appointments.

    The phrase captures a painful reality for some patients: they may feel more understood by people with lived experience than by the professionals they turn to for help.

    Terri connects with this perspective because she has witnessed the value of patient-to-patient education throughout her advocacy work.

    Helping Patients Find Knowledgeable Lyme Disease Doctors

    As an ILADS Ambassador, Terri helps direct people toward educational resources and healthcare professionals with experience in Lyme disease and other tick-borne infections.

    She explains that finding an appropriately trained clinician can be difficult, particularly in areas with limited specialist availability.

    Even when knowledgeable practitioners are nearby, long waiting lists may delay appointments.

    Terri believes medical education is essential to improving this situation.

    She discusses the role of ILADS conferences in bringing together clinicians, researchers, and advocates who want to improve the recognition and treatment of tick-borne illnesses.

    Patients seeking care can explore the ILADS website for educational resources and information about finding healthcare professionals.

    When choosing a clinician, patients should consider professional credentials, diagnostic methods, treatment recommendations, and whether the provider offers an evidence-informed approach that respects patient concerns.

    Why Terri Believes Awareness Is Creating Hope

    Despite the difficult experiences described throughout the interview, Terri and Rich conclude on an optimistic note.

    Rich reflects on changes he has witnessed during years of interviewing Lyme disease patients, physicians, researchers, and advocates.

    He explains that he now encounters more people actively working to improve awareness, education, testing, and treatment.

    Terri shares his optimism.

    She believes patient advocacy, public education, and storytelling can help families recognize when further medical evaluation may be necessary.

    Her book is part of that effort.

    By sharing the experiences of people who struggled for years before receiving additional answers, she hopes to encourage more informed conversations between patients, families, and healthcare professionals.

    The message is not that every unexplained illness is Lyme disease.

    It is that patients deserve careful investigation, compassion, and the opportunity to pursue answers when their symptoms remain unexplained.

    Key Takeaways

    • Delayed diagnosis can have serious consequences. Terri's family spent years searching for explanations while her daughters experienced worsening symptoms.
    • Lyme disease testing has limitations. Test results must be interpreted in the context of symptoms, exposure history, timing, and other clinical information.
    • Medical dismissal can deepen suffering. Patients may experience isolation and loss of support when their symptoms are questioned.
    • Lyme disease can affect multiple body systems. Some manifestations overlap with neurological, rheumatological, and other conditions.
    • Families play an important role. Understanding and believing that a loved one's symptoms are real can make a meaningful difference.
    • Patient stories can encourage further investigation. Terri's book highlights the importance of considering additional explanations when a diagnosis remains uncertain.
    • Community provides validation. Support groups and patient advocates can help people feel less alone.
    • Education and advocacy create opportunities for change. Terri hopes her work will improve awareness and encourage earlier recognition of tick-borne illnesses.

    About This LIVE from ILADS Interview

    This conversation was recorded at the 2025 International Lyme and Associated Diseases Society Conference in San Antonio, Texas.

    Rich interviews Terri McCormick about her family's diagnostic journey, her work as an ILADS Ambassador, and the experiences that inspired Being Misdiagnosed.

    The interview explores the challenges of Lyme disease testing, medical dismissal, neurological symptoms, caregiver support, and the importance of

30. Episode 601: Ending Chronic Illness: Dr. Richard Horowitz’s Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease

    16.10.20261 Std. 45 Min.Staffel 1 · Folge 601Als Nächstes

    For more than four decades, Dr. Richard Horowitz has challenged conventional thinking about chronic illness. His work treating more than 13,000 chronically ill patients has led to one of the most influential …

    Shownotes

    For more than four decades, Dr. Richard Horowitz has challenged conventional thinking about chronic illness. His work treating more than 13,000 chronically ill patients has led to one of the most influential clinical frameworks in Lyme disease medicine: MSIDS® (Multiple Systemic Infectious Disease Syndrome).

    Now, in his groundbreaking new book, Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease, Dr. Horowitz expands that framework far beyond Lyme disease. He presents a bold new model suggesting that many of today's most common chronic illnesses—including Alzheimer's disease, Long COVID, autoimmune disorders, chronic fatigue syndrome, cardiovascular disease, autism spectrum disorders, psychiatric illness, and cancer—share common inflammatory pathways and root causes that can be identified and addressed.

    In this exclusive Tick Boot Camp interview, Matt Sabatello and Rich Johannesen spend more than two hours taking a deep dive into Dr. Horowitz's latest work, exploring the science behind chronic inflammation, the evolution of his MSIDS model, his precision medicine approach to healing, and why he believes medicine must shift from treating symptoms to identifying the multiple factors keeping patients sick.

    Whether you're living with Lyme disease, another chronic illness, or simply want to understand the future of personalized medicine, this conversation offers one of the most comprehensive discussions Dr. Horowitz has ever shared.

    You can purchase Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease on Amazon

    Meet Dr. Richard Horowitz

    Dr. Richard Horowitz is a board-certified internist, internationally recognized Lyme disease specialist, researcher, educator, and New York Times bestselling author. After beginning his medical career as a traditional internist, he found himself practicing in one of the country's earliest Lyme disease epicenters in New York's Hudson Valley.

    Over the past 40+ years, Dr. Horowitz has become one of the world's leading clinicians treating chronic Lyme disease and complex chronic illness. His clinical experience treating more than 13,000 patients led him to develop the MSIDS model, a comprehensive framework that looks beyond a single diagnosis to identify multiple overlapping factors driving persistent illness.

    His previous books, Why Can't I Get Better? and How Can I Get Better?, transformed how many physicians and patients approach chronic Lyme disease. His newest book expands that framework to virtually every major chronic disease.

    In This Episode, You'll Learn: Why Dr. Horowitz Believes Chronic Disease Needs a New Model

    Rather than viewing illnesses as isolated diagnoses, Dr. Horowitz argues that chronic diseases often share common inflammatory drivers.

    He explains why treating a diagnosis alone frequently fails while identifying multiple underlying causes can dramatically improve outcomes.

    Understanding the MSIDS Model

    The conversation explores the evolution of MSIDS (Multiple Systemic Infectious Disease Syndrome), which identifies sixteen overlapping contributors to chronic illness.

    The six primary "drivers of inflammation" include:

    • Chronic infections
    • Environmental toxins
    • Microbiome dysfunction
    • Leaky gut and food sensitivities
    • Vitamin and mineral deficiencies
    • Sleep disorders

    Dr. Horowitz explains how these root causes create widespread inflammation that then produces additional downstream effects throughout the body.

    The Three I's: Infection, Inflammation, and Immunity

    One of the interview's central themes is Dr. Horowitz's "Three I's" framework.

    He explains how:

    • Persistent infections trigger inflammation
    • Chronic inflammation damages immune function
    • Impaired immunity allows additional infections to thrive

    Breaking this cycle, he argues, is essential for long-term recovery.

    Chronic Inflammation: The Common Thread

    A major focus of the discussion is inflammation.

    Dr. Horowitz explains why inflammation—not simply infection—may be the underlying mechanism connecting:

    • Lyme disease
    • Long COVID
    • Alzheimer's disease
    • Autoimmune disorders
    • Mood disorders
    • Chronic fatigue syndrome
    • Cardiovascular disease
    • Cancer
    • Autism spectrum disorders

    The 16 Inflammatory Pathways

    Building upon the MSIDS model, Dr. Horowitz discusses sixteen major inflammatory pathways that regulate immune function and chronic disease.

    He explains how pathways such as NF-κB, NRF2, the NLRP3 inflammasome, and prostaglandin signaling interact to sustain inflammation and why targeting these pathways may improve outcomes across numerous diseases.

    Precision Medicine Instead of One-Size-Fits-All Care

    Rather than treating everyone identically, Dr. Horowitz advocates for personalized medicine.

    Every patient presents a unique combination of infections, environmental exposures, immune dysfunction, nutritional deficiencies, hormone imbalances, mitochondrial dysfunction, and other contributing factors.

    The goal is to identify each person's unique inflammatory burden and systematically remove the factors preventing recovery.

    Dapsone Combination Therapy

    Dr. Horowitz explains how years of clinical experience led to the development of his Dapsone Combination Therapy protocols.

    The discussion covers:

    • Persister bacteria and biofilms
    • Combination antibiotic strategies
    • Reducing Herxheimer reactions
    • Supporting detoxification
    • Managing treatment side effects
    • The importance of antioxidants, probiotics, methylfolate, glutathione, and other supportive therapies

    He emphasizes that successful treatment involves much more than simply prescribing Dapsone.

    Lyme Disease, Alzheimer's Disease, and Neuroinflammation

    The interview also explores Dr. Horowitz's recent work investigating Lyme disease and Alzheimer's disease.

    He discusses how chronic infections, environmental toxins, and neuroinflammation may contribute to cognitive decline and why reducing inflammation may become an important future direction for neurodegenerative disease research.

    Emotional Trauma and Chronic Illness

    Drawing from Chapter 3 of his new book, Dr. Horowitz discusses the biological impact of trauma and chronic stress.

    He explains why unresolved trauma, limbic system dysfunction, and chronic stress physiology can perpetuate inflammation and why healing often requires addressing both physical and emotional health.

    Environmental Toxicity

    Chapter 4 of the book examines the growing role of environmental toxins.

    Dr. Horowitz discusses:

    • Mold exposure
    • Heavy metals
    • Air pollution
    • Plastics and endocrine disruptors
    • Pesticides
    • Water quality

    He argues that modern environmental exposures contribute significantly to chronic inflammation and should be evaluated as part of any comprehensive treatment plan.

    Prevention Matters

    Although much of the discussion centers on treating chronic illness, Dr. Horowitz emphasizes prevention.

    He shares many of the lifestyle practices he personally follows, including:

    • Anti-inflammatory nutrition
    • Exercise
    • Sleep optimization
    • Stress reduction
    • Detoxification support
    • Targeted supplementation
    • Reducing environmental toxin exposure

    His message is simple: protecting health before illness develops may be just as important as treating disease after it appears.

    Key Takeaways

    • Chronic illness often results from multiple overlapping causes rather than a single diagnosis
    • Inflammation may be the common biological mechanism connecting many seemingly unrelated diseases.
    • The MSIDS model provides a practical framework for identifying and treating these underlying contributors
    • Personalized precision medicine may offer better outcomes than symptom-focused treatment alone
    • Addressing infections, toxins, gut health, nutrition, sleep, immune dysfunction, and emotional health together may dramatically improve recovery
    • Prevention through lifestyle and inflammation reduction should become a central focus of modern medicine.

    Why This Episode Matters

    For decades, Dr. Richard Horowitz has challenged traditional assumptions about chronic disease.

    In Ending Chronic Illness: A Revolutionary New Program to Reverse Inflammation and Heal Persistent Disease, he brings together thousands of patient experiences, years of clinical research, and an evolving understanding of inflammation into one comprehensive roadmap for patients and physicians alike.

    Whether you agree with every conclusion or simply want to better understand one of today's most influential voices in integrative medicine, this conversation offers an extraordinary look at how the future of chronic illness care may evolve.

    If you or someone you love is navigating Lyme disease, Long COVID, autoimmune illness, chronic fatigue, persistent inflammation, or another complex chronic condition, this is an episode you won't want to miss.

Hier stehen die neuesten 40 von 621 Folgen. Ältere Folgen findest du im Feed des Podcasts.