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.
“The opening of a network of Lyme disease clinics is the culmination of many years of tireless work and the vision of a small group of determined women over 10 years ago. We are extremely optimistic that the Lyme Clinical Trials Network will accelerate the development of new treatments for patients with post-treatment and persistent Lyme disease.”
—Linda Giampa, Executive Director, Bay Area Lyme Foundation
When Bay Area Lyme Foundation (BAL) was formed a decade ago, its mission was clear: to make Lyme disease easy to diagnose and simple to cure. “And that’s still our goal,” emphasizes BAL co-founder Bonnie Crater, as she reflects on the last 10 years. However, appreciating the magnitude of the Foundation’s audacious mission requires an understanding of two complex—yet inextricably linked—medical domains: the world of diagnostics, and the world of therapeutics.
The ‘Holy Grail’ for Lyme disease is an accurate diagnostic test—or better yet a suite of specifically designed tests for the different stages of acute and persistent Lyme disease. Although great strides are being made in understanding the infection and the disease’s progression, the ‘silver bullet’ of accurate diagnostic tests continues to elude us. The current diagnostics for acute Lyme (a two-step process with an ELISA either followed by a Western blot or another ELISA) are fraught with problems. These tests may miss up to 70% of acute Lyme cases or deliver false negative results. They are unreliable for detecting acute Lyme and are ineffective indicators for anyone with a persistent/chronic tick-borne infection. (Watch or listen to our Ticktective with Brandon Jutras, PhD, to learn why the current direct detection tests for Lyme are so inaccurate.)
Add to this the fact that FDA-approved therapeutics—or ‘cures’—have not evolved much in 10 years either and foment controversy. A quick internet search on ‘How to treat Lyme disease’ will offer information from the IDSA (Infectious Diseases Society of America) stating that a 10-14-day course of oral antibiotics, such as amoxicillin or doxycycline, will do the job for someone with an EM (Erythema migrans) rash who has early/acute Lyme. But anyone who has had Lyme disease, been treated, and then experienced a continuation of symptoms knows that this recommended course of intervention often fails to clear the infection, leaving some persistent Lyme patients in limbo, and health care providers without an approved treatment protocol. Simply put, this is the continuing underlying treacherous terrain of Lyme, throwing up challenges in both diagnostics and therapeutics.
In this conversation between Ticktective™ host Dana Parish and Harvard-trained pediatric infectious diseases specialist Charlotte Mao, MD, the discussion focuses on how Dr. Mao gradually moved away from the narrow view of Lyme disease and began to champion understanding and therapeutics for children suffering from persistent Lyme. They explore tick-borne diseases and their connection to other chronic illnesses that are often misunderstood and misdiagnosed by conventional medicine. 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 atbayarealyme.org.
Dana Parish: Hi I’m so excited to guest host the Ticktective podcast today. I want to introduce you to a very dear friend of mine, one of the most brilliant, curious, interesting, funny, and dearest people. Please welcome Dr. Charlotte Mao. She is a pediatric infectious diseases physician with a special focus on Lyme disease and associated infections. She received her medical degree at Harvard Medical School and did her pediatric and infectious diseases training at Boston Children’s Hospital. The first 25 years of her career were focused primarily on pediatric HIV clinical care and clinical research, serving as a site co-investigator for numerous NIH funded multi-center pediatric HIV clinical trials at Boston Children’s Hospital. She turned her focus to Lyme and associated diseases after gaining extensive clinical experience with pediatric Lyme patients in Boston children’s hospital’s referring ID clinic. Then she joined the Pediatric Infectious Disease Department at Mass General Hospital and Spaulding Rehab Hospital Dean Center for Tick-borne Illness, where she was the pediatric IG specialist in a multidisciplinary clinic for children with complex Lyme disease. She is currently curriculum director for Invisible International. She most recently served on a tick-borne disease working group subcommittee for prevention and treatment and co-organized a Cold Spring Harbor Laboratory Banbury Conference on perinatal transmission of Lyme Disease. She’s also on the Bay Area Lyme Foundation’s Science Committee. Welcome, Charlotte. It’s so great to see you!
National Lyme Clinical Trials Network Gains Its First West Coast Center, Thanks to $1M+ Donation from Bay Area Lyme Foundation
The University of California San Francisco Lyme Clinical Trials Center will support innovative clinical trials to develop treatments for patients with persistent Lyme disease
Portola Valley, CA, March 09, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces it has awarded more than $1M to the University of California San Francisco (UCSF) for the development of a Lyme Clinical Trials Center. This new center will become the first West Coast site of the Lyme Clinical Trials Network. 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.
“The founding of the UCSF Lyme Clinical Trials Center provides a unique opportunity for Lyme patients to participate in the next generation of therapeutic trials to combat this devastating disease,” said Charles Chiu, MD, PhD, of the University of California San Francisco who will lead the UCSF Lyme Clinical Trials Center. “Very few clinical trials have been initiated to investigate therapeutic solutions to address persistent symptoms of Lyme disease, and we hope to change this.”
Dr. Steven Harris, a physician specializing in Lyme at Pacific Frontier Medical, was guest speaker as part of our Distinguished Speaker Series. His presentation on the complexity of tick-borne diseases is transcribed below to share his invaluable insights into novel treatment options for those living with chronic/persistent Lyme and other intractable infections that severely curtail patients’ quality of life, bringing hope and restoring health to many. Note: This transcribed presentation has been edited for clarity.
What is “Precision Medicine”?
“The concept of precision medicine, which is a growing area, is where we look at an individual and try to create a tailored plan for that person. I think many doctors wish that we could have a ‘cookbook’ approach to medicine that would work for our patients. But unfortunately, that approach doesn’t work. Luckily, here in the San Francisco Bay Area, there are doctors offering precision medicine including Dr. Sunjya Schweig in Berkeley, Dr. Christine Green, with us at Pacific Frontier Medical, and Dr. Eric Gordon, at Gordon Medical Associates in Marin and others. And thankfully, we have Stanford and UCSF (our local medical centers) that we work peripherally with. In addition, the Open Medicine Foundation is making great strides in understanding illness and Dr. Mike Snyder’s group at Stanford who are working on multi omics for chronic fatigue that track an individual patient’s data.
“These doctors are working in their own fields, not necessarily just tick-borne diseases, but our work overlaps. For example, the Snyder Lab multi-omic study involves genomics, epigenomics, metabolomics, where they are looking at tons of data and assimilating a lot of this different data to try to create treatment plans that work for the individual, because of the fact that a ‘cookbook’ approach doesn’t work for this group of chronic complex patients. For example, we look at someone’s multi-ome and the parts that make them up, including their microbiome, epigenome among many others, which is becoming a bigger and more exciting field. One of the practical aspects we try to determine is how to address an individual’s level of inflammation, the diversity of their personal bacterial flora, and how to help compensate for any deficiencies—or over abundances—that help contribute to disease.
How a chance meeting and the harnessing of big data led to a research initiative that’s finding answers in Lyme and tick-borne disease
Many different groups comprise the Lyme disease community including patients, their families, healthcare providers, researchers and nonprofit organizations. These nonprofit organizations and foundations may differ in size, structure, fiscal basis, focus and approach, but in one important aspect they are united: the search for answers.
This search for answers in the realm of Lyme and tick-borne diseases has served as a unifying driver, even when dissent and controversy has sometimes fragmented the Lyme community. And despite what seems to be a constant uphill battle for recognition and legitimacy of Lyme and tick-borne infections, many believe that we’re on the brink of major breakthroughs to help patients and doctors unlock the medical mysteries that make these infectious diseases so confounding. Two people cautiously optimistic about where we are in the search for answers about Lyme are Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, and Lorraine Johnson, JD, MBA, Chief Executive Officer, LymeDisease.org and Principal Investigator MyLymeData.
Remember when we used to watch Captain Kirk talk into his chirping communicator and order Scotty to beam him up? And what about that handy medical scanner the size of a pack of cards that Dr. McCoy waved around to assess and diagnose his patients in the starship’s sick bay? We may now all have smartphones to stay in constant touch with each other, but outside of a state-of-the-art hospital with multi-million-dollar scanners and MRI machines, we are still some years away from the Star Fleet’s instantaneous medical technology, right?
Advances in our ability to gather real-time information on the human body are poised to revolutionize not just how we diagnose diseases, but make dramatic, life-altering, positive impacts on the critical timeline for diagnosis and treatment by detecting a disease event before symptoms occur. And Bay Area Lyme is leading the way by investing in research that will further illuminate our understanding of how—in real time—a Lyme infection impacts the human body through the data collected by wearable technologies.
Written by: Wendy Adams, Research Grant Director & Advisory Board Member, Bay Area Lyme Foundation
Unless you’ve been living under a rock for the last few years, you’ll have learned that tick-borne diseases are on the rise across the United States. Many theories exist as to why this is the case. However, most scientists that study ticks and their habitats agree that a combination of reasons—including climate change and human encroachment into tick habitats—are at least partially to blame.
Although Lyme disease (caused by the bacterium Borrelia burgdorferi) is the most common disease that humans acquire from tick bites, ticks can unfortunately transmit several other bacteria, viruses, and parasites to humans. Multiple infections can even be transmitted during the same bite. The confusing and overlapping disease symptoms caused by multiple infections makes it extremely difficult for doctors to recognize, diagnose and treat the different infections.
Calling All Scientists: Bay Area Lyme Foundation Now Accepting Applications for 2022 Emerging Leader Award
Grant aims to inspire new research for the diagnosis and treatment of Lyme disease
PORTOLA VALLEY, California, December 6, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2022 Emerging Leader Awards (ELA), which recognize U.S. researchers from academia or the private sector who bring new approaches to the field of Lyme disease and embody the future of Lyme disease research leadership. At least two grants in the amount $100,000 each will be awarded. Proposals must have a defined scientific approach and rationale that can advance diagnostics or treatments for Lyme disease, and applicants are encouraged to bring innovative learnings from other therapeutic areas to their research projects. Applications will be accepted through March 15, 2022, at midnight Pacific Time. The full criteria and application for this grant award can be found here.
“The world is seeing firsthand the damage that infections can cause—both in acute and chronic forms. Just has COVID has encouraged collaboration, we hope that existing Lyme scientists as well as scientists from other disease areas will apply for this grant, offering new hypotheses and technologies to diagnose and treat Lyme and other tick-borne disease,” said Wendy Adams, research grant director, Bay Area Lyme Foundation.
Herbal Medicines Demonstrate Potency Against Bartonella, a Disease-causing Pathogen, According to New Lab Study
Three of these herbal medicines also have high potency against Borrelia burgdorferi, the bacterium that causes Lyme disease, and Babesia duncani, according to previous lab studies also funded by Bay Area Lyme Foundation
PORTOLA VALLEY, CA, August 5, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the publication of new data showing that herbal medicines have potent activity in test tubes compared to pharmaceuticals commonly-prescribed for the treatment of Bartonella henselae, a bacterium believedto be carried by ticks and the cause of cat scratch fever. This is the first study to find antimicrobial activity of some of these herbal medicines. Published in the journal Infectious Microbes & Diseases, the laboratory study was funded in part by the Bay Area Lyme Foundation.
“With increasing rates of tick-borne diseases and a consistent concern about the overuse of antibiotics, this early research of herbals is extremely exciting,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “We are hopeful that future pre-clinical and clinical studies will continue to show that herbals have the same effectiveness as this study and other recently-published studies.”