Young Hearts, Hidden Battles: A pediatric infectious disease physician’s perspective on Lyme disease and neuropsychiatric manifestations

Charlotte Mao, MD MPH

Distinguished Speaker Series Transcript

 

“Everything about this disease is infinitely more complex and nuanced than is taught to physicians.”

– Charlotte Mao, MD MPH

Charlotte Mao, MD MPHCharlotte Mao: Thank you Dana for that amazing introduction and Brandi too. I want to thank Brandi for so generously opening up your beautiful home for this event and Bay Area Lyme Foundation for inviting me to speak tonight about my personal perspectives as a pediatric infectious disease physician about Lyme disease in children, particularly neuropsychiatric manifestations. 

When Brandi asked if I might give a talk for this Speaker Series, I suggested this topic because, first, I hope there might be something instructive in some of my personal musings on key lessons I’ve learned about Lyme disease in the course of caring for children with this contested disease. Second, I want to highlight neuropsychiatric manifestations because I feel they generally are the least recognized by physicians as being potential manifestations of Lyme disease. Yet, taking into account all levels of severity, they are, in my view, actually quite common—certainly not uncommon—and when severe, they are among the most devastating of Lyme manifestations to the lives of children and their families.

New Discovery Identifies “Don’t Eat Me” Protein that Allows Lyme Bacteria to Evade Body’s Immune Response

New Discovery Identifies “Don’t Eat Me” Protein that Allows Lyme Bacteria to Evade Body’s Immune Response

FOR IMMEDIATE RELEASE

 

New Discovery Identifies “Don’t Eat Me” Protein that Allows Lyme Bacteria to Evade Body’s Immune Response

Stanford University/MIT/UCSF study funded by Bay Area Lyme Foundation offers new direction for tick-borne disease research, paving the way for potential new discoveries   

Palo Alto, CA, May 7, 2024—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced a study finding a new mechanism of immune evasion used by Borrelia burgdorferi (Bb), the bacterium that causes Lyme disease. This study is the first to identify the specific Borrelia protein that acts as a “don’t eat me” signal to the body’s immune system in people with Lyme disease, offering insight into how the bacteria may persist in Lyme patients and introduces an entirely new research direction toward potential future treatments. The research was conducted at Stanford University and University of California San Francisco and funded in part by Bay Area Lyme Foundation. This groundbreaking data posted on bioRxiv on April 30, 2024, is expected to be published in a peer-review journal in the future.

“One of the big mysteries of Lyme disease has been how Borrelia is able to evade and survive the immune system – and this study helps answer that question. We’ve unlocked a critical door to understanding how this bacteria, and possibly other pathogens, manage to trick the immune system to evade clearance,” said lead author Michal Tal, PhD, principal scientist, Massachusetts Institute of Technology, and a Bay Area Lyme Foundation 2018 Emerging Leader Award winner who has received additional funding from the organization for this project.

In this study, researchers found that P66, a known Borrelia surface protein and one of the IgG Western Blot testing “bands” used for diagnosis, can inhibit an important portion of the immune response.

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

Functional Medicine for First Responders

BAL Leading the Way Series

 

Dr Sunjya SchweigSunjya 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

New Study Reveals Potential Treatment for Neurologic Lyme Disease

Geetha Parthasarathy, PhD

FOR IMMEDIATE RELEASE

 

 New Study Reveals Potential Treatment for Neurologic Lyme Disease

Blocking certain fibroblast growth factor receptors is shown to be effective in reducing inflammation and cell death caused by neurologic Lyme infection in laboratory studies

PORTOLA VALLEY, Calif. April 18, 2024—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, recently announced the publication of a laboratory study showing that fibroblast growth factor receptor (FGFR) inhibitors may be appropriate as an anti-inflammatory supplementary treatment for neurologic Lyme disease, for which there are no universally effective treatments. Published in the peer-reviewed journal Frontiers in Immunology, this study shows FGFRs are activated in response to both live and non-viable Lyme bacteria in preclinical brain tissue models. Further, inhibition of FGFR1, FGFR2, and FGFR3 may help mitigate the neuroinflammatory and neuropathogenic effects of infection by the bacteria that causes Lyme disease, Borrelia burgdorferi.  

“Our research shows a potential connection between neurological Lyme disease and several other neurological conditions, and this common pathway may explain why Lyme can be confused with many other conditions. Increasing our knowledge of FGFRs and their effect on the brain will help us understand the common mechanisms that may underlie Lyme disease and other neurological diseases,” said Geetha Parthasarathy, PhD, assistant professor at Tulane National Primate Research Center, Tulane School of Medicine, and a Bay Area Lyme Foundation 2019 Emerging Leader Award winner. “This data shows that FGFRs can be novel targets of anti-inflammatory therapeutics in Lyme patients with persistent neuroinflammation.”

“Our findings from this and our previous studies also offer important insight that may help to explain why some patients still experience chronic neurological symptoms even after a short course of antibiotics,” added Dr. Parthasarathy.

 New Study Demonstrates Protein May Provide Protection Against Lyme Disease

Mikki Thal, PhD

FOR IMMEDIATE RELEASE

 

 New Study Demonstrates Protein May Provide Protection Against Lyme Disease

Sweat protein protects against Lyme disease in vivo and is a potential therapeutic avenue for drug development

PORTOLA VALLEY, Calif. April 3, 2024—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, recently announced the identification of an unknown common missense variant at the gene encoding for Secretoglobin family 1D member 2 (SCGB1D2) protein that increases the susceptibility for Lyme disease as well as two previously known variants. Published in the peer-reviewed journal Nature Communications, this study shows normal versions of the SCGB1D2 protein prevent infection by Borrelia in vivo and appear to be a host defense factor present in the skin, sweat, and other secretions, opening an exciting potential therapeutic avenue for Lyme disease. This research was also featured on NBC10 News in Boston.

“We are excited that our international collaboration with Hanna Ollia’s group and our co-authors has turned up such an exciting and unexplored avenue in the body’s defenses against Lyme disease,” said Michal Tal, PhD, Principal Scientist in the Department of Biological Engineering at MIT, and a Bay Area Lyme Foundation 2018 Emerging Leader Award winner. “This discovery reveals a human protein with protective activity against the bacteria that cause Lyme disease, which we hope could lead to a future path for exploring new methods to prevent and treat Lyme disease.”

This research has shown that the genetic variant of the SCGB1D2 which creates a misshapen protein appears to be specific for Lyme disease and has not been previously reported as associated with any other disease, phenotype, or infection. The researchers also found that about one-third of the population carries a genetic variant of this protein that is associated with Lyme disease in genome-wide association studies (GWAS).

Principal Investigator, Dr. Felicia Chow, Talks about the New Lyme Clinical Trials Center at UCSF

UCSF Parnassus campus San Francisco

BAL Leading the Way Series

 

“I was seeing more and more patients here at UCSF who hadn’t traveled to Massachusetts, New Jersey, or other places endemic for Lyme, but rather had just been in the California Bay Area or on West Coast trips to places that we don’t consider—at least by the classic maps—as being endemic Lyme areas.”

– Felicia Chow, MD, Associate Professor of Neurology and Medicine at University of California, San Francisco

Felicia Chow, MD

There’s been much excitement in the Lyme community regarding the founding and development of the Lyme Clinical Trials Network since it was first announced. With a $1m seminal grant from Bay Area Lyme Foundation, UCSF joined the Clinical Trials Network to further study and develop better treatments for patients with Lyme and other tick-borne diseases. The Network aims to address the need for high quality, innovative clinical trials to develop evidence-based treatments for patients with persistent Lyme symptoms following initial antibiotic treatment—a population that has grown to more than two million Americans and continues to increase. We sat down with Principal Investigator, Dr. Felicia Chow, to learn more about plans for this California Clinical Trials Network node, and her role as Director of the UCSF Neuro-Infectious Diseases Clinic

Dr. Chow is a neurologist specializing in infectious diseases. This means she’s particularly interested in how pathogens like bacteria, viruses, and parasites, invade the nervous system and cause neurological damage and/or symptoms. Her expertise is in managing conditions such as brain abscesses, neurocysticercosis (a parasitic infection of the brain), neurosyphilis, and neurological complications associated with HIV. Additionally, she is well-versed in infectious causes of meningitis, encephalitis, and myelitis.

Top Lifestyle Interventions to Aid Recovery in Tick-borne Illness: An Interactive Discussion with Concrete Takeaways

Dr Sunjya Schweig Speaker Series

BAL Spotlights Series

 

In this article transcribed from our Distinguished Speaker Series webinar, Sunjya Schweig, MD, founder and CEO of the California Center for Functional Medicine and member of Bay Area Lyme’s Scientific Advisory Board, discusses how recovering from tick-borne illnesses can be aided through carefully devised combinations of conventional and functional medicine, tailored to the individual person. Nancy Chimsky, retired interior designer and Lyme patient, who has been challenged with tick-borne infections since 1997, shares her personal Lyme story in the first part of this webinar.

Dr. Schweig discussed the top four lifestyle areas critical to aiding recovery and explains how and why optimizing each area is key to treating and managing Lyme and tick-borne disease. The lifestyle areas are:

  • Diet and nutrition
  • Stress reduction and neuroplasticity
  • Sleep
  • Detoxification

Dr. Schweig also discussed the important role that botanical and herbal medicines have in recovery. He discusses the individualized nature of treatment and testing for Lyme disease, including the use of various lab tests and the consideration of co-infections. Finally, Dr. Schweig emphasizes the importance of finding the right healthcare practitioner who can address the complexity of Lyme disease and provide appropriate treatment. The session concludes with a Q&A session about what people are doing to manage their health, and Dr. Schweig provided practical suggestions and concrete takeaways based on these questions from attendees.

Mother’s Against Lyme: Congenital Lyme Disease

Isabel Rose Ticktective TRanscript

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 LymeNote: 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

Shellie Krick Blog

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

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

Ticktective with Todd Maderis, ND

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

Mold in petri dishDana 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.