ticks Archives - Bay Area Lyme Foundation

Understanding Infection-associated Chronic Illness: How the Immune System Responds to Persistent Infection

Distinguished Speaker Series with Michal Tal, PhD

By Bay Area Lyme Foundation

Distinguished Speaker Series Transcript

“I want to leave you with hope. I think we’re going to be unstoppable because I think that these are solvable problems. These are answerable questions. I think that there are already a lot of existing tools in immunology that just need to be brought into the fight, and we can change this.”

– Michal Caspi Tal, PhD

Michal Caspi Tal: In the chronic illness world, I think that there is something about hope with a capital ‘H’ that is precious. I think it always has to be. I want to talk a little bit about what my lab is doing, where I think we could go in the future and the hope that I have for how we move forward, how we solve this, and how we change this for those who come after us. So, I’ll tell you a little bit about some of the recent things that have come out of the lab, what the lab is working on now, and where we want to go.

New Study Shows How Borrelia burgdorferi Evades the Immune System

Recently, we published a study in collaboration with Hanna Ollila’s lab where we compared people who’ve had Lyme and have had a diagnosis of Lyme versus people who’ve never had a diagnosis of Lyme. We found a genetic difference in a sweat protein that nobody—including me—had ever thought about before. We tested it against the bacteria in our lab, and we saw that it had a huge effect; we tested it in mice, and it had a huge effect. So that’s really exciting. We had another paper that came online yesterday that is one of these last papers from my postdoctoral work over at Stanford, where we actually managed to figure out some of how Borrelia burgdorferi, the bacteria that causes Lyme, manages to evade immune clearance.

Any respectable pathogen that can establish a persistent infection needs to figure out your immune system to the point that it can evade it. The fact that it has persisted means that it was able to evade your immune clearance. And so, I got to that from a very interesting direction working on immune regulation, trying to understand these brakes on the immune response and how they impact the response to infection. The immune system has the power to kill you and obviously, nobody has any incentive for that to happen. So, there are a lot of mechanisms in place to put brakes on the immune system and reign it in. One of the huge developments in cancer over the last two decades has been reevaluating the question: can we take those brakes off? So in my postdoc, I was studying a particular checkpoint where this was turning into an exciting immuno-oncology target, and I said, ‘I want to look at how this checkpoint is used in infection.’ I realized that this checkpoint was being used to help you survive an acute infection, but created a vulnerability for pathogens to evade immune clearance and establish chronic infection much like it allows cancer cells to evade immune clearance. In an amazing collaboration with Irv Weissman, Balyn Zaro, and Jenifer Coburn we realized that the bacteria that cause Lyme disease manipulate this brake and that’s how I became fascinated with Lyme. But I also became concerned about turning off this brake in cancer patients because I was concerned about what would happen if you used this on cancer patients during an active infection. Indeed, the clinical trials on this drug were ended due to increased death from infection, and I wish it hadn’t been tested during a worldwide pandemic.

Unlocking the Mysteries of Tick-borne Infections: Lyme Disease Biobank’s Tissue Collection Program Drives Research Momentum

Kirsten Stein and the Lyme Disease Biobank

By Bay Area Lyme Foundation

BAL Leading the Way Series

“My family knows that after I die, my tissues will be donated to Lyme Disease Biobank to provide researchers with the vital material they need to solve this horrible disease. I urge anyone with chronic/persistent Lyme to register with NDRI today. Let’s end this suffering together.”

-Kirsten Stein, Lyme Advocate

Lyme Disease Biobank^®, led by Liz Horn, PhD, MBI, is central to Bay Area Lyme Foundation’s 10-year search for answers to Lyme’s most intractable questions and is the most important program in the Foundation’s mission to make Lyme disease easy to diagnose and simple to cure.

The original Lyme Disease Biobank sample collection launched in 2014 focused on obtaining blood, urine, and serum samples from patients with early/acute Lyme disease. Once this program had been fully established, the Lyme Disease Biobank team explored adding tissue samples to the Biobank. Tissue samples could help researchers expand their investigations beyond the early stage of infection into how chronic/persistent Lyme and other tick-borne diseases impact the central nervous system, joints, and organs of Lyme patients.

With the tissue bank objectives defined, the Biobank connected with specialist organizations to provide the critical support needed to support sample collection and make the development of a tissue bank a reality.

Post-Mortem Tissue Collection Planning

Lyme Disease Biobank established a key partnership with the nonprofit National Disease Research Interchange (NDRI) to provide logistics for post-mortem tissue collection for the new tissue program. The Biobank also partnered with MyLymeData.org, allowing Lyme patients registered with the Biobank to link their MyLymeData profile to their tissue donation if desired. Bringing these two resources together provides for the organizing and recovery of post-mortem (after death) tissue. It ensures samples include redacted (removes identifying information) detailed patient medical histories—an important nuance for Lyme disease researchers.

“Although it is an emotional and difficult idea for anyone to plan to donate parts of their body to science after they have died, we believe that this decision is an important way for Lyme patients to change the course of Lyme disease research. Having access to tissues from the brain, heart, joints, and central nervous system of Lyme patients allows researchers to prove unequivocally that Lyme is present in tissue and contributes to patient suffering,” explains Linda Giampa, Executive Director, Bay Area Lyme Foundation and board member of Lyme Disease Biobank.

Toxic Load: Healing from Tick-borne Disease, Long Covid, Mold, & Bad Food

By Bay Area Lyme Foundation

Jill Carnahan, MD

Jill Carnahan, MD, is a functional medicine doctor with a huge media presence, board-certified in Family Medicine and Integrative Holistic Medicine. She is the Medical Director of Flatiron Functional Medicine, a sought-after practice with a broad range of clinical services. As a survivor of breast cancer, Crohn’s disease, and toxic mold illness she brings a unique perspective to treating patients in the midst of complex and chronic illness. Her clinic specializes in searching for the underlying triggers that contribute to illness through cutting-edge lab testing and tailoring the intervention to specific needs.

Featured in People magazine, Shape, Parade, Forbes, MindBodyGreen, First for Women, Townsend Newsletter, and The Huffington Post as well as seen on NBC News and Health segments with Joan Lunden, Dr. Jill is a media must-have. Her YouTube channel and podcast features live interviews with the healthcare world’s most respected names.

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Keeping Frontline Workers Safe: New Program Will Educate Firefighters At Risk for Lyme Disease

Functional Medicine for First Responders

By Bay Area Lyme Foundation

BAL Leading the Way Series

Sunjya Schweig, MD, founder of the California Center for Functional Medicine, discusses a new program he is developing with funding from Bay Area Lyme to provide education and awareness about Lyme disease and the risks of tick-borne infections for firefighters. Firefighters have a profile of unique occupational exposures, including tick bites, and there is a significant lack of education on this topic. This new program aims to create professional, engaging videos featuring firefighters sharing their experiences and providing information on tick bite prevention, checking for ticks, and what to do if bitten. The goal is to roll out the program in California first, targeting professional firefighter and first responder organizations and eventually expanding nationwide. The exact number of firefighters living with Lyme disease is unknown, but it is acknowledged that they have both occupational and recreational exposures. This new program is seen as a way to bring awareness and education to this population and beyond.

“Lyme is not really on the radar for many firefighters. They may have had tick bites either in the line of duty or out mountain biking or hiking when they’re off duty, but many don’t know that tick-borne disease is a big problem.”

– Sunjya Schweig, MD

Ticktective with Dana Parish: Brain Bugs: A Neurologist Discusses Lyme, PANS, & PANDAS

By Bay Area Lyme Foundation

Elena Frid, MD

Dr. Elena Frid is a Neurologist and Clinical Neurophysiologist specializing in Infection Induced Autoimmune Disorders. With clinical interests in Autoimmune Neurology, she sees patients with complex cases of Lyme disease + co-infections, PANS/PANDAS, and Autoimmune conditions resulting in various neurological complaints. Using cutting-edge diagnostic tools and clinical expertise, she differentiates between idiopathic and organic causes of various neurological disorders. Her knowledge has been sought by patients from all over the United States, as well as Canada and Europe. Dr. Frid attended a coveted BA/MD program at Robert Wood Johnson Medical School (RWJMS) and went on to North Shore-LIJ Health Care Systems (currently Northwell) where she completed a residency in Neurology and a fellowship in Clinical Neurophysiology.

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Mother’s Against Lyme: Congenital Lyme Disease

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

Isabel Rose, writer, performer, and activist is interviewed by Ticktective host, Dana Parish. Rose is working on a memoir chronicling her lifelong battle against Lyme disease, which she passed on in utero to both of her children. They discuss Isabel’s experience with Lyme disease and its impact on her and her children. Isabel highlights the lack of awareness and understanding of Lyme disease among medical professionals, leading to misdiagnosis and delayed treatment. She also discusses the connection between Lyme disease and other health issues, such as depression, autism, and gender dysphoria. She champions support for congenital Lyme disease and transgender children and their families. She emphasizes the need for improved diagnostic tools, better treatment options, and increased public awareness of Lyme. Isabel also calls for further research into the connection between Lyme disease and negative health outcomes. She is on the executive board of Project Lyme and co-chair of Mothers against Lyme. Note: This interview has been edited for clarity.

“I was misdiagnosed for a horrifyingly long period of time—as were both my children.”

– Isabel Rose

Lyme Patient, Shellie Krick, Discusses a Better, Calmer Way to Get Through the Day

By Bay Area Lyme Foundation

BAL Spotlights Series

In her book, The Art of Living With Chronic Illness, Pain, and Disability: A Practical and Spiritual Approach Inspired by the 12-Step Recovery Model, author, and former social worker Shellie Krick, explores how she used the 12-step Al-Anon program as a template to cope with her Lyme disease. Shellie has experienced over 30 years of chronic health problems stemming from Lyme and Bartonella infections, misdiagnosis, and dangerous, unproven treatments—some of which caused serious harm. Her book stems from her personal journey, offering a step-by-step guide to developing a different way of handling daily life with a chronic illness or chronic pain.

“I definitely wasn’t the type of person who liked sitting around doing nothing—Lyme has been really hard on me in that way. But through my book, if I can help just one person cope with their situation better, then I will feel I have accomplished a lot.”

– Shellie Krick

Ticktective with Dana Parish: Mother’s Against Lyme: Congenital Lyme disease

By Bay Area Lyme Foundation

Isabel Rose

Isabel Rose is a writer, performer and activist. She has addressed audiences large and small urging understanding of, and support for, both congenital Lyme disease and rights for transgender children and their families. Rose is working on a memoir chronicling her lifelong battle against Lyme disease which she passed along, in utero, to both her children. Isabel is on the executive board of Project Lyme and co-chair of Mothers Against Lyme. She leads a bi-monthly support group for women coping with Lyme disease and its impact on their lives and on the lives of their children.

To read the podcast transcript, click here.

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The Chronic Illness Puzzle: Mold, Metals, Toxins, Infections

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

In this conversation with Dana Parish, Todd Maderis, ND, talks about his extensive experience treating tick-borne infections, chronic viral infections, mold illness, and other conditions associated with complex chronic illness. He underscores the significance of identifying the root causes of symptoms and how tailoring individualized treatment approaches is key to healing. Dr. Maderis also delves into the role of trauma in chronic illnesses and emphasizes the importance of gut healing and inflammation reduction through dietary choices. Dr. Maderis acknowledges the challenges involved in addressing chronic diseases and stresses the importance of a personalized, patient-centric approach.

“I think a lot of times in conventional medicine, we don’t think beyond the room that we’re sitting in with a patient, we have to ask about the environment. We have to look at more than just the symptoms the person’s presenting with in the office.”

– Todd Maderis

Dana Parish: I am so excited today because I’m here with Dr. Todd Maderis. Thank you so much for being here today. I’m thrilled to talk to you. Let me tell you a little about Dr. Maderis. He’s the founder and medical director of Marin Natural Medicine Clinic in the San Francisco Bay Area. He specializes in treating tick-borne infections, chronic viral infections, mold illness, and other conditions associated with complex chronic illness such as Mast Cell Activation Disorder, and ME/CFS. His approach to treating chronic illness is to identify all underlying causes of symptoms to provide a clear direction for treatment. With over a decade of experience treating Lyme disease and complex chronic illness, he knows that every patient is unique and requires individualized treatment therapy. Welcome! It’s great to see you!

Todd Maderis: Thank you for having me. It’s great to be here.

Dana Parish: How’d you get into this mess?

Todd Maderis: Gosh, that’s always a great question. You start going down a rabbit hole and sometimes you wonder, but I wouldn’t change a thing. My first five years of practice, I was treating people with common complaints: digestive issues, fatigue issues, thyroid issues, etc. I’m a naturopathic doctor, so we tend to see people that come with common complaints that maybe they’re not getting resolved in conventional medicine. Then one visit, I had a patient that brought in a Lyme disease test result. It was an iGenex test, but back then the results were pretty hard to interpret.

Ticktective with Dana Parish: The Chronic Illness Puzzle: Mold, Metals, Toxins, Infections

By Bay Area Lyme Foundation

Todd Maderis, ND

Dr. Todd Maderis is the Founder and Medical Director of Marin Natural Medicine Clinic in the San Francisco Bay Area. He specializes in treating tickborne infections, chronic viral infections, mold illness, and other conditions associated with complex chronic illnesses such as mast cell activation disorder and myalgic encephalomyelitis/chronic fatigue syndrome. His approach to treating chronic illness is to identify all underlying causes of symptoms to provide a clear direction for treatment. With over a decade of experience treating Lyme disease and complex chronic illnesses, he realizes each patient is unique and requires an individualized treatment strategy.

To read the podcast transcript, click here.

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