Lyme disease Archives - Bay Area Lyme Foundation

Ticktective with Dana Parish: From Harvard MD to MS Patient: Wisdom from Both Sides

By Bay Area Lyme Foundation

Annie Brewster, MD

Annie Brewster is an Assistant Professor of medicine at Harvard Medical School, a practicing physician at Massachusetts General Hospital, in Boston, a writer and a storyteller. She is also a patient, diagnosed with Multiple Sclerosis in 2001. In response to the disconnection she experienced in healthcare, both as a patient and a provider, and motivated by her belief in the power of stories, she started recording patient narratives in 2010. Integrating her personal experiences with the research supporting the health benefits of narrative, she founded Health Story Collaborative (HSC) in 2013. HSC is dedicated to helping individuals navigating health challenges find meaning, and ultimately heal, through storytelling. She is excited by interdisciplinary, cross-institutional collaborations that break through resistance to change. She is widely published in the press and is author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss (2022).

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Foundational Work Scores Results

By Bay Area Lyme Foundation

BAL 10-year Anniversary Series

10 Years of Collaboration Bringing Hope: How Dr. John Aucott’s Relationship with Bay Area Lyme Helped Get Groundbreaking Biobanks Launched to Fuel the Research Engine of Lyme Disease Investigations

In this blog, part of our 10-year anniversary blog series, we talk with John Aucott, MD, Associate Professor of Medicine at Johns Hopkins University, Director of the Lyme Disease Research Center, about his work and how his investigations are helping us understand persistent/chronic Lyme infections. A long-term collaborator and grant recipient of Bay Area Lyme Foundation, Dr. Aucott reflects on his history with our organization, the ongoing plight of Lyme disease patients, and the slow growth in government funding for investigations into the disease. He talks about the early days of identifying the need for well-characterized samples from Lyme patients and his role in helping launch biobank programs, including his own SLICE Study Biorepository and BAL’s Lyme Disease Biobank.

Bay Area Lyme: I want to take you right back to the very beginning of your relationship with Bay Area Lyme (BAL), the founding of your SLICE study and our Lyme Disease Biobank (LDB) and talk about everything that was happening 10 years ago. People talk about the “norming, storming and forming” stages of organizations, and there was an awful lot of activity going on 10 years ago in the world of Lyme disease. And so, please share your thoughts on what was happening around that time, your part in it, and how you came into the picture with BAL and our biobank.

SLICE Studies — The Study of Lyme disease Immunology and Clinical Events (SLICE), Johns Hopkins University Lyme Disease Research Center

John Aucott: My first memory is that I flew out to California and my agenda at that time was getting people interested in research. There was very little funding for Lyme disease research, and to some extent there still isn’t a great amount of funding for Lyme disease, especially the kind of research I do, which is clinical translational research. I’m an MD, so my research involves bridging basic science to human beings to patients. So, to be very candid about it, I was interested in getting BAL interested in my work. I pitched what we were doing. We had already set up the Johns Hopkins SLICE study, the Study of Lyme disease Immunology and Clinical Events. And at that point it was one of only two large scale biobanks collecting for Lyme disease. The other one is Dr. Gary Wormser’s, who still has a biobank in Valhalla, New York.

So, I was pitching the idea of a Lyme disease biobank to BAL, and this was a whole new concept. A biobank is a hard concept to sell initially because people don’t understand that setting up a biobank is like being Levi Strauss: It’s selling the Levis and the picks, and the shovels—not selling them the actual gold in your pocket. And it’s a hard pitch because people don’t understand that somebody has to supply the foundational work so that other people can mine for the gold. But BAL caught on to the idea that the biobank that we had at Hopkins was a crucial resource that would enable collaboration with other researchers to advance the scientific understanding of disease mechanisms and potentially identify and validate biomarkers for improving diagnostics and treatments.

LymeAid 2013 — LymeAid 2014 Scientific Panel (from left): Wendy Adams, John Aucott, MD, Carin Rollins, and Bill Robinson, MD, PhD

Bay Area Lyme bought into the importance of this idea. The first thing that happened was you asked me to be on the BAL Scientific Advisory Board soon thereafter. BAL expressed support for the SLICE study’s biobank at Hopkins and you actually gave us one of our first grants to help support our biobank work. So, that was the first thing that happened. We applied for a grant, and we got a grant from BAL to help us because we had not yet gotten federal funding for it. So, that was one of the first grants to support it, and now in 2023 we are finally receiving our first NIH funding.

How to Diagnose if Lyme Disease is Affecting the Heart and How to Best Treat It

By Bay Area Lyme Foundation

BAL Spotlights Series

Dr. Adrian Baranchuk, Professor of Medicine at Queen’s University in the Division of Cardiology in Ontario, Canada discusses his screening process for identifying Lyme infections in the heart and how to treat these patients without unnecessary pacemakers. He has published research and spoken on the topic of Lyme carditis at numerous conferences. He is passionate in his efforts to educate doctors on diagnosing Lyme-related AV heart block. Dr. Baranchuk joined Bay Area Lyme Advisor Lia Gaertner to discuss the cardiological manifestations of Lyme disease, Lyme Carditis and specific cases that illustrate his approach.

Lia Gaertner: Welcome to the Ticktective podcast and video series, a program of the Bay Area Lyme Foundation, where our mission is to make Lyme disease easy to diagnose and simple to cure. I’m your host, Lia Gaertner. Lyme disease is the most common vector-borne disease in the USA and is a global issue. This podcast includes interviews with the researchers we fund, as well as other interesting people in the Lyme scientific community. We are a nonprofit foundation based in Silicon Valley. Thanks to a generous grant that covers all of our overhead, 100% of all donations go directly to support research and prevention programs. You can find out more or donate@bayarealyme.org. Thank you for joining the Ticktective video and podcast series, Dr. Baranchuk

Adrian Baranchuk: Thank you very much for having me.

Lia Gaertner: Dr. Baranchuk, a native of Buenos Aires, Argentina, completed his training in internal medicine in cardiology, along with clinical fellowship in cardiac electrophysiology. Dr. Baranchuk is a tenured professor of medicine at Queen’s University in the division of cardiology in Ontario, Canada. He is the editor-in-chief of the Journal of Electrocardiology, as well as a member of numerous editorial boards and a reviewer for several medical journals. Dr. Baranchuk has authored eight books and published more than 700 articles in prestigious international journals, as well as 54 book chapters, and he’s presented more than 270 abstracts around the world. He is the vice president of the International Society of Halter and Non-Invasive Electrocardiology, and the Secretary of the Inter-American Society of Cardiology. He’s also the past president of the International Society of Electrocardiology. He’s been elected as a member of the Electrophysiology Leadership section of the American College of Cardiology, and is the recipient of several teaching awards as well as being voted one of the 10 most influential Hispanics in Canada.

Adrian Baranchuk: Thank you very much for the invitation. I am so pleased to be here with you today.

Lia Gaertner: I’d like to start with a case study published in the Canadian Medical Association Journal (CMAJ). It reads:

“A fatal case of Lyme disease in a previously healthy 37-year-old man illustrates the challenges of diagnosing Lyme disease in the absence of classic symptoms. The patient originally presented to his family doctor with flu-like symptoms, including fever, sore throat, nasal congestion, and migratory joint pain. Several weeks earlier, he had been in contact with ticks but didn’t recall removing one. His physician suspected a viral infection and the patient’s symptoms resolved. However, weeks later, he developed heart palpitations, shortness of breath, and chest discomfort for which he was sent to the emergency department. Lyme disease was suspected as the ECG showed complete heart block. He was admitted to the hospital and started treatment for Lyme carditis. But his condition unfortunately worsened quickly. Clinicians were unable to reverse the course of his illness, and he died. Serology results confirmed Lyme disease and an autopsy showed Lyme carditis.”

Biosafety is Key to Our Future: The Truth About Germs, Lab Leaks, and Information Warfare

By Bay Area Lyme Foundation

BAL Spotlights Series

In this episode of Ticktective™, Dana Parish talks with Raina MacIntyre (MBBS Hons 1, M App Epid, PhD, FRACP, FAFPHM) about how lab safety lapses are still leading to frequent undocumented lab leaks, her concerns over Long Covid and the ongoing dangers of the pandemic, and how public health agencies use information warfare to keep everyone in the dark about what is happening at the forefront of biomedical investigations, especially in the field of experimental gain of function research. Raina MacIntyre is Head of the Biosecurity Program, Kirby Institute, University of New South Wales (UNSW), Australia, and author of Dark Winter. She has over 450 peer-reviewed publications, has received many awards including the Sir. Henry Wellcome Medal from the Association of Military Surgeons of the US and is a member of the WHO COVID-19 Vaccine Composition Technical Advisory Group and WHO Smallpox and monkeypox working group.

Dana Parish: Welcome to the Ticktective podcast, a program of the Bay Area Lyme Foundation, where our mission is to make Lyme disease easy to diagnose and simple to cure. I’m your host Dana Parish, and I’m the co-author of the book Chronic and I sit on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with scientists, clinicians, patients, and other interesting people. We’re a nonprofit based in Silicon Valley, and thanks to a generous grant that covers a hundred percent of our overhead, all of your donations go directly to our research and prevention programs. For more information about Lyme disease, please visit us@bayarealyme.org.

Dana Parish: Hi, I’m Dana Parish and I’m thrilled today to welcome Dr. Raina McIntyre. Let me tell you a little bit about her. Raina McIntyre, MBBS is head of the Biosecurity program, Kirby Institute, UNSW. She leads research on prevention of epidemic infections, including EPI watch, an AI-driven early warning system for serious outbreaks. She has over 450 peer reviewed publications. She’s received many awards including the SIR Henry Welcome Medal from the Association of Military Surgeons of the US. She was on a US National Academies of Science Engineering Medicine Pandemic Consensus Committee, and she’s a member of W’S Covid 19 Vaccine Composition Technical Advisory Group and WHO Smallpox and Monkeypox Working Group. Has written over 450 publications and I am really pleased to have met you through this new nonprofit that we’re both a part of called BiosafetyNow.org. You know, it’s an honor to be able to learn from you and meet you, and I’d love to talk a little bit about your background and what it means to be a biosecurity expert and an MD and a PhD in your area of expertise.

Raina MacIntyre: I started my career as a medical doctor and I was going to be a cardiologist because I’d done a lot of cardiology, in my specialist physician training and wanted to do cardiology. But I was also interested in epidemiology. I saw an ad for this Master of Applied Epidemiology, which is the Australian Field Epidemiology Training Program, which is a type of hands-on training in outbreak investigation that was pioneered by the US CDC called the Epidemic Intelligence Services. And in some countries when you do it, you get a degree. So, I decided to do that degree and it was quite life-changing for me because it was a new way of learning where you do just short bursts of classroom learning, but then you go out in the field, you investigate outbreaks and you apply the learning that you had in the classroom to practical problems in the field where you’re investigating outbreaks, trying to work out: What is this? Where did it start? How can it be stopped?

Bay Area Lyme Ambassador Shares Her Story

By Bay Area Lyme Foundation

Guest Blog by Jessica Devine

Bay Area Lyme Foundation is one of the first sources of information I found when I was finally diagnosed. I realized through the years that only a few resources could always be relied upon for accurate information based on scientific research. I also feel connected to BAL because I was bit in California by a tick that carried Lyme, Babesia, Bartonella, Erhlichia, Rocky Mountain Spotted Fever and more. I have always trusted their information for over a decade now. What they do and continue to do to help this community is something I will always be grateful for.

Creating an uplifting space for Lyme patients has been my dream since my first TV interview when a local station asked me to come on and share my story. Once on camera, I was filled with passion when given the chance to speak about my story, the injustices of Lyme disease treatment and getting a late diagnosis.

From there, people started reaching out to me needing help. I had kind of lost myself in my illness and slowly, through advocacy work, I gained a feeling that I can only describe as finding your true purpose. When I help someone, I have peace.

I found groups to be depressing and I knew the only way to have the group that best served a patient in the ways I needed was to create it myself. I wanted a solution based group that required all of its members to act with kindness. Alongside my own Lyme doctor’s methods, member polls and an accumulation of top resources, I finally was able to create the first Lyme Disease and Co-Infections Directory to cover almost any topic related to these diseases. An easy way for a patient to find the information quickly and learn. I feel the more we understand about these diseases, why we have the symptoms we have and how to help ourselves heal, we become more hopeful and empowered.

Ticktective with Dana Parish: Biosafety Is Key to Our Future: the Truth About Germs, Lab Leaks, and Information Warfare

By Bay Area Lyme Foundation

Raina MacIntyre, MD, PhD

Raina MacIntyre (MBBS Hons 1, M App Epid, PhD, FRACP, FAFPHM) is Head of the Biosecurity Program, Kirby Institute, UNSW and author of “DARK WINTER”. She has over 450 peer-reviewed publications, has received many awards including the Sir Henry Wellcome Medal from the Association of Military Surgeons of the US, and is a member of the WHO COVID-19 Vaccine Composition Technical Advisory Group and WHO Smallpox and monkeypox working group.

To read the podcast transcript, click here .

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On the Front Lines of Lyme Treatment: A Conversation with Pioneer Kenneth Liegner, MD

By Bay Area Lyme Foundation

BAL Spotlights Series

In this conversation between Ticktective™ host Dana Parish and pioneering physician Kenneth Liegner, MD, the discussion focuses on how Dr. Liegner, frustrated and perplexed by the lack of options for persistent/chronic Lyme, came to prescribe disulfiram—a drug intended to treat alcoholics—as an off-label therapeutic for his Lyme patients. He recounts what happened next, and reflects on the impact of his bold experiment, plus they touch on how a Covid infection may impact Lyme patients, causing a resurgence of latent symptoms. They also explore the history of tick-borne diseases and the lack of recognition among clinicians, the government, and insurance companies for these insidious infections that cause chronic suffering for many. Note: This transcribed podcast has been edited for clarity.

Dana Parish: Welcome to the Ticktective Podcast, a program of the Bay Area Lyme Foundation, where our mission is to make Lyme disease easy to diagnose, and simple to cure. I’m your guest host today, Dana Parish. I’m the co-author of the book Chronic, and I’m on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with clinicians, scientists, patients, and other interesting people. We’re a non-profit foundation based in Silicon Valley, and thanks to a generous grant that covers a hundred percent of our overhead, all of your donations go directly to our research and our prevention programs. For more information about Lyme disease, please visit us at bayarealyme.org.

Dana Parish: I’m so thrilled to be guest hosting Ticktective for you today on behalf of Bay Area Lyme Foundation. I’m here with a dear friend and a brilliant Lyme physician, internist, author, Dr. Kenneth Liegner. Dr. Kenneth Liegner is a board-certified internist with additional training in pathology and critical care medicine, practicing in Pawling, New York. He’s the author of an extraordinary documentarian history of Lyme called In the Crucible of Chronic Lyme Disease, Collected Writings and Associated Materials. We’ll talk about that more later. Dr. Liegner is also the first to apply disulfiram in the treatment of Lyme, and he published his experience in the peer-reviewed journal Antibiotics. Thank you so much for being here with me today, Dr. Liegner.

Bay Area Lyme Foundation Celebrates Department of Defense CDMRP Tick-borne Disease Awardees

By Bay Area Lyme Foundation

Bay Area Lyme Foundation Celebrates Department of Defense CDMRP Tick-borne Disease Awardees

Projects of three awardees to be enabled by Lyme Disease Biobank samples

PORTOLA VALLEY, Calif., March 23, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces that two projects it has previously funded have now received Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Tick-Borne Disease awards. Three of the six recently announced CDMRP awardees will be using biological samples from Bay Area Lyme Foundation’s Lyme Disease Biobank to enable their research into diagnostics and therapeutics for tick-borne diseases, including Lyme disease—which infects half a million people each year.

“Government awards like CDMRP help propel much needed research on tick-borne illnesses forward, and, with three diagnostics projects using Biobank samples, we are honored to play a part in making this important research possible,” said Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, which provides researchers with access to reliable biological samples to enable research toward better diagnostics and treatments for these complex diseases. “If researchers don’t have access to well-characterized blood samples with robust testing and medical information, they can’t build the necessary research programs to develop better diagnostics, which are urgently needed for these complex diseases,” added Dr. Horn.

Ticktective: Healthy Nutrition Is Crucial for Those with Lyme Disease and Chronic Health Conditions

By Bay Area Lyme Foundation

Lindsay Christensen, MS, CNS, LDN, A-CFHC, CKNS

Lindsay Christensen is the author of the book, “The Lyme Disease 30-Day Meal Plan: Healthy Recipes and Lifestyle Tips to Ease Symptoms”. She provides nutrition consulting services at the California Center for Functional Medicine and her private practice, Ascent to Health.

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One Lyme Patient’s Challenging Quest to Donate Her Body to Science in Her Final Days

By Bay Area Lyme Foundation

BAL Spotlight Series

In Puerto Rico, Donating Your Body to Science is Almost Impossible

Luisette Mauras Rodriguez working in the lab at Cornell — Working in the lab at Cornell in 1997

Luisette Mauras Rodriguez is lying in bed at home in Guyana, Puerto Rico, waiting to die. She’s 46 years old, her body ravaged by Lyme, numerous tick-borne coinfections, and a multitude of other hits caused by environmental exposure to toxins like black mold, fungus, mycoplasma, and chikungunya virus. Family members do not understand her illness and laugh at her ‘exaggerations.’ Her husband left her because he fears getting sick and his religious convictions cause him to question the validity of her condition. Her mother, formerly a registered nurse, has abandoned her to her fate. Whenever Luisette gets desperate for help and goes to the ER, they refer her to the psych ward saying her illness is fabricated.

Cornell University and the surrounding woods where she was bitten

A former professional lab technician who worked in pharmaceutical development with US companies like Wyeth, SmithKline Beecham, and IPR Pharmaceuticals, Luisette has one dying wish: to donate her body to the Lyme Disease Biobank (LDB) so that samples from her brain, joints, organs, and tissues will be used to fuel much-needed research into Lyme and tick-borne diseases. She has registered with the National Disease Research Interchange (NDRI) in Philadelphia to have her body collected after her death, but as of writing this article, staff there are unable to find any medical professional on the island willing to partner with them to ensure this happens.

“We have been unsuccessful in securing anyone for recovery for the donor located in Puerto Rico. It has been very difficult getting anyone to follow up with us on top of the language barrier. We were trying to give the pathology department at the University time to get back to us but they seem to be very busy. The complexity of the recovery also makes it more difficult as well.” — Wauchita Green, Manager, Organ & Tissue Source Sites, NDRI, The National Disease Research Interchange