Tick Boot Camp

Matt Sabatello and Rich Johannesen

Tick Boot Camp is a Lyme disease and tick-borne illness podcast featuring interviews with leading doctors, researchers, scientists, patients, advocates, and experts. Explore Lyme disease symptoms, testing, diagnosis, treatment, recovery, chronic Lyme disease, coinfections, PANS/PANDAS, MCAS, neurological symptoms, emerging research, and the latest advances in tick-borne disease care. Through expert education and powerful patient stories, Tick Boot Camp provides hope, validation, practical information, and a community for people navigating Lyme disease and complex chronic illness.

  1. 6h ago

    New Lyme Disease Test Detects 3 Infections at Once – Dr. Jennifer Miller | LIVE from ILADS

    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: L

  2. 1d ago

    Lyme Disease Nearly Took Her Life. Now She's Funding Treatment – Darlene O'Connor | LIVE from ILADS

    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

  3. 2d ago

    Why Lyme Disease Tests Miss Patients – Dr. Liz Horn on Breakthrough Research | LIVE from ILADS

    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 ot

  4. 3d ago

    Why Is Chronic Lyme Disease Harder on Women? – Dr. Anne VanCouvering | LIVE from ILADS

    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

  5. 4d ago

    Ticking Point: Filmmaker Reece Robinson on Alpha-Gal Syndrome, Lone Star Ticks & a Growing Tick Crisis

    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.

  6. 5d ago

    Can Lyme Disease Contribute to Heart Disease? – Dr. Tom Haidt | LIVE from ILADS

    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 disc

  7. 6d ago

    Lyme Disease, Medical Gaslighting & Finding Hope – Anne Desjardins | LIVE from ILADS

    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 peop

  8. Oct 21

    Neurological Lyme, Seizures & Misdiagnosis – Dr. Pamela Cipriano | LIVE from ILADS

    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 microorgani

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About

Tick Boot Camp is a Lyme disease and tick-borne illness podcast featuring interviews with leading doctors, researchers, scientists, patients, advocates, and experts. Explore Lyme disease symptoms, testing, diagnosis, treatment, recovery, chronic Lyme disease, coinfections, PANS/PANDAS, MCAS, neurological symptoms, emerging research, and the latest advances in tick-borne disease care. Through expert education and powerful patient stories, Tick Boot Camp provides hope, validation, practical information, and a community for people navigating Lyme disease and complex chronic illness.

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