tick-borne disease Archives - Bay Area Lyme Foundation

UCSF’s New Lyme Clinical Trials Center: Addressing the Need for Evidence-Based Treatments for Lyme & TBD Patients

By Bay Area Lyme Foundation

Bay Area Lyme Happenings Series

UCSF has joined the Cohen Foundation’s nationwide Lyme Clinical Trials Network (CTN) for Lyme and tick-borne diseases. The new Lyme Clinical Trials Center (CTC) at UCSF was funded by a $1m grant from Bay Area Lyme Foundation and is led by Charles Chiu, MD, PhD, and Felicia Chow, MD, as co-principal investigators. As the West Coast ‘node’ in the network, UCSF’s new Lyme Clinical Trials Center will focus on interventional trials and diagnostic studies to improve diagnosis and treatment of Lyme disease.

In this presentation to patients with Lyme disease in Marin County just north of San Francisco, Dr. Chow explains how the CTC allows for a more diverse patient population to participate in Lyme clinical trials, which is critical for developing therapies that can help a wider range of patients. UCSF’s involvement also aims to help Bay Area Lyme raise awareness that Lyme disease is prevalent year-round in almost all California counties.

Dr. Chow discusses an upcoming trial at UCSF that will evaluate the use of transcranial direct current stimulation (tDCS) to improve cognitive symptoms in patients with chronic Lyme disease. Additionally, UCSF researchers are exploring the use of metagenomic sequencing and machine learning to develop more accurate diagnostic tests for Lyme and other tick-borne infections.

Note: This transcript of Dr. Chow’s presentation has been edited for length and clarity.

“I hope that through these clinical trials, we’ll be able to identify therapies that are helpful to patients and that, as a result, have an impact on clinically meaningful outcomes—from day-to-day function, quality of life, and all of those important measures that indicate that a treatment is successful.”

– Felicia Chow, MD

Lyme Patient Releases Smooth Jazz Album: Easing the Pain with Approachable Melodies

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight Series

“My goal was to create happy, melodic, and approachable music that everyone in the Lyme community can enjoy during infusions, when they are feeling down, or just need a distraction of their own.”

– Steve Ehrlich, Lyme patient

Steve Ehrlich emigrated to the Bay Area from South Africa in 1989. Chronic Lyme Disease cut his career in the software industry short, and he turned to writing music. His virtual band, The Inter Section, released its debut album, Jazz and All That, in November 2024. He spends his days on his sofa writing music with his dog, Teddy, making sure the notes are correct.

The Numbers Don’t Lie: Why the NIH Consistently Underfunds Research into Lyme Disease

By Bay Area Lyme Foundation

An In-depth Interview with Kris Newby, Author of “Bitten”

“We need to let the NIH know that we’re watching them, and we want results.”

– Kris Newby

Kris Newby, author of ‘Bitten,’ is investigating government spending on Lyme disease research, which is strongly influenced by the flawed original disease definition of Lyme disease. She summarizes the impact of the 2018 Tick-Borne Disease Working Group’s report, explains where research funding has and is currently being directed, and calls for money to be spent on better diagnostics and treatments for Lyme disease sufferers instead. Kris explores potential actions that Lyme patients can take to help direct the course of funding, such as communicating with Congress, supporting advocacy groups, and donating to research organizations.

The views and opinions expressed in this article are those of the interviewee and do not necessarily reflect the views or positions of Bay Area Lyme Foundation.

Kris Newby is watching our government, and watching quite closely. She has a lot to say about how government money is spent on a disease that, according to CDC estimates, infects almost 500,000 people annually in the US, causing untold pain, suffering, loss of livelihood, and, in extreme cases, severe mental illness, including suicidal and homicidal events.

Of course, we are talking about Lyme disease—the pariah of infection-associated chronic conditions.

Bay Area Lyme Foundation Opens Applications for 2025 Emerging Leader Award and Research Grant

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Opens Applications for 2025 Emerging Leader Award and Research Grant

In its tenth year, the annual grant encourages novel approaches to revolutionizing diagnosis and treatment of tick-borne diseases

PORTOLA VALLEY, Calif., October 31, 2024 – Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., invites innovative researchers from academia and the private sector to apply for the 2025 Emerging Leader Awards (ELA). These awards recognize those advancing novel approaches in Lyme disease diagnostics and treatments, while embodying the future of Lyme disease research leadership. This year, in its tenth anniversary, Bay Area Lyme Foundation’s ELA will present two $150,000 awards for researchers who are at the post-doctoral level through associate professor level or equivalent.

While applicants must have a defined scientific approach to advancing diagnostics and/or therapeutics for Lyme disease, the grants are open to researchers from other therapeutic areas in addition to those who have previously investigated Lyme disease. Applications will be accepted through March 7, 2025 at 11:59pm, Pacific Time. The full criteria and application for this award can be found at www.bayarealyme.org/our-research/emerging-leader-award/.

“The global impact of both acute and chronic infections has never been more apparent, and tackling an infectious disease as complex as Lyme requires innovative approaches and concerted efforts to drive progress in diagnostics and treatment,” said Wendy Adams, research grant director Bay Area Lyme Foundation. “Our goal with the Emerging Leader Award is to inspire ambitious and creative scientists to take on the challenge of advancing accurate diagnostics and effective therapeutics for various stages of tick-borne diseases.”

Toxic Load: Healing from Tick-borne Disease and Autoimmune Illness

By Bay Area Lyme Foundation

BAL “Quick Bites” Series

“If you have an autoimmune disease, our allopathic system does not have great answers that are solution-based or root cause-based to chronic complex illness.”

– Jill Carnahan, MD

In this edition of our Ticktective video and podcast series, Dana Parish sits down with Jill Carnahan, MD, a functional medicine doctor specializing in Lyme disease, tick-borne illnesses, mold toxicity, and other complex chronic health issues. Carnahan discusses her background growing up on a farm and how it influenced her approach to medicine. She shares her experience being diagnosed with breast cancer and the potential environmental factors, such as atrazine, that may have contributed to it. Carnahan talks about her cancer treatment and her belief in finding and addressing root causes in medicine. She then discusses her expertise in Lyme and tick-borne diseases, explaining how she evaluates and treats these conditions. She emphasizes the need for a clinical diagnosis of Lyme disease due to the limitations of mainstream tests. Carnahan also sheds light on the connection between mold exposure and chronic illness, including dementia and psychiatric disorders. She provides insights into testing, detoxification, and treatment strategies for mold-related illnesses. The interview concludes with information about connecting with Dr. Carnahan’s clinic, her book, and her documentary.

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.

Watch Now

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

By Bay Area Lyme Foundation

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: 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.

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