ALL ABOUT KIDS WITH LYME, PANS, MOLD ILLNESS

DAna Parish interviews Dr Charlotte Mao

Ticktective Podcast Transcript

 

Charlotte Mao, MDIn 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 at bayarealyme.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

Lyme Clinical Trials Network

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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.” 

UCSF will join the Lyme Clinical Trials Network led by Columbia University, which includes Children’s National Hospital (part of the National Institutes of Health), and Johns Hopkins University. This important effort is funded by the Steven & Alexandra Cohen Foundation.

Treating Complex Chronic Diseases: Novel Therapeutic Options for Lyme Patients

Bay Area Lyme Speaker Series with Steven Harris

BAL Happenings Series

 

Bay Area Lyme Speaker Series San Jose 2022
Dr Steven Harris speaking at the Bay Area Lyme Speaker Series in San Jose, September 29, 2022

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.

Mike Snyder, PhD
Mike Snyder, PhD, Stanford University

“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.

Fueling the Research Engine

Lyme Disease Biobank

BAL Leading the Way Series

 

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.

The Future of Lyme Diagnostics: How Wearable Technology May Lead to Fast, Accurate and Reliable Lyme Disease Detection

Mike Snyder PhD Wearables Project

BAL Leading the Way Series

 

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? 

Wrong.

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.

Lyme With a Side—or Two—of Babesia: The Most Common Co-Infection that is Frequently Missed

Babesia parasites inside red blood cell

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

ELA winner Michael Rout

FOR IMMEDIATE RELEASE

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

Herbal Medicines Demonstrate Potency Against Bartonella

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

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 believed  to 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.”

Bay Area Lyme Foundation Selects National Winners of the 2021 Emerging Leader Awards to Advance Research for the Diagnosis and Treatment of Lyme Disease

2021 Emerging Leader Awards

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Selects National Winners of the 2021 Emerging Leader Awards to Advance Research for the Diagnosis and Treatment of Lyme Disease

Brandon Jutras, PhD of Virginia Tech, Nitya Ramadoss, PhD of Stanford University and Michael P. Rout, PhD of The Rockefeller University are this year’s recipients

PORTOLA VALLEY, Calif., July 6th, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., announces the recipients of the 2021 Emerging Leader Awards (ELA), which are designed to support promising scientists who represent the future of Lyme disease research leadership. Michael P. Rout, PhD of The Rockefeller University will receive $250,000 for his work with nanobodies to develop a sensitive point-of-care diagnostic. Brandon Jutras, PhD of Virginia Tech and Nitya Ramadoss, PhD of Stanford University will each receive $100,000 toward the development of a novel direct-detection diagnostic approach for Lyme disease and a novel therapeutic based on B-cell mapping, respectively. Lyme disease is a potentially disabling infection diagnosed in nearly half a million Americans each year.

“As there is not a diagnosis or treatment that works for all patients, there is a critical need to develop direct-detection diagnostics as well as treatments that can prevent the development of persistent Lyme disease, and we are excited to support these novel approaches that have shown success in other areas,” said Linda Giampa, executive director, Bay Area Lyme Foundation.

Two of the award winners will utilize biological samples from the Lyme Disease Biobank, a program of the Bay Area Lyme Foundation, to collect well-characterized human tissue, blood and urine specimens to accelerate research of Lyme disease and other tick-borne infections.

Five Herbal Medicines Potent Against Tick-Borne Disease Babesiosis in Lab, Says New Study

Five Herbal Medicines Potent Against Tick-borne Disease Babesiosis in Lab says Dr Sunjya Schweig

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Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Five Herbal Medicines Potent Against Tick-Borne Disease Babesiosis in Lab, Says New Study

Research Supported by Bay Area Lyme Foundation Points to Need for More Effective Treatments Compared to Currently Utilized Treatments for Tick-Borne Infections

PORTOLA VALLEY, CA, March 9, 2021 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the publication of new data finding that five herbal medicines had potent activity compared to commonly-used antibiotics in test tubes against Babesia duncani, a malaria-like parasite found on the West Coast of the U.S. that causes the disease babesiosis. Published in the journal Frontiers in Cellular and Infection Microbiology, the laboratory study was funded in part by the Bay Area Lyme Foundation. Collaborating researchers were from Johns Hopkins Bloomberg School of Public Health, California Center for Functional Medicine, and FOCUS Health Group, Naturopathic.

“This research is particularly important as babesiosis is a significant emerging health risk. Due to limited therapeutics and a rise in treatment resistance, current treatment options for this disease are inadequate and many patients rely on herbal therapies for which there is only anecdotal evidence of efficacy,” said co-author Sunjya K. Schweig, MD, Founder and Director, California Center for Functional Medicine and Scientific Advisory Board Member, Bay Area Lyme Foundation, who has also studied herbal treatments for Lyme disease.

“Increasingly, Americans with chronic diseases are pursuing complementary and alternative medicine to improve general health or quality of life. We hope this data offers inspiration to other researchers to further explore similar options for people living with persistent tick-borne diseases that do not respond to current treatments,” added Dr. Schweig.