News Archives - Bay Area Lyme Foundation

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.”

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.

Bay Area Lyme Foundation Selects National Winner of the 2024 Emerging Leader Award for Research of Combination Therapies to Treat Chronic Lyme Disease

Trever Smith, PhD winner of Emerging Leader Award

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Selects National Winner of the 2024 Emerging Leader Award for Research of Combination Therapies to Treat Chronic Lyme Disease

Winner Trever Smith, of Tufts University, will collect novel therapeutic data to develop a first-of-its-kind drug interaction compendium for Lyme Disease

PORTOLA VALLEY, Calif., August 1, 2024—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the recipient of the 2024 Emerging Leader Award (ELA), which is designed to support new and innovative research and aims to attract aspiring new scientific talent to the field of Lyme. This year’s winner, Trever Smith, PhD, Research Assistant Professor of Molecular Biology and Microbiology at Tufts University School of Medicine, will receive $150,000 for his work to identify precise treatment combinations that more effectively target persistent Borrelia burgdorferi (Bb) infection in persistent Lyme patients. For this research, Dr. Smith intends to develop a first-of-its-kind drug interaction compendium to help prioritize the most effective combinations for testing in pre-clinical models of Lyme disease. To do so, Dr. Smith will leverage techniques he and other researchers use to identify effective drug combinations against other infectious diseases, such as tuberculosis, and translate them for Bb. Due to the difficulty in diagnosing and treating Lyme disease, it is estimated that over two million patients currently suffer from the debilitating later-stage symptoms of persistent Lyme in the US, and there are currently no FDA-approved treatments for the persistent symptoms of Lyme disease.

“While combination therapies to treat chronic Lyme have shown promise in early research and are widely used with success in other disease areas, the vast majority of chronic Lyme patients are not able to benefit from combination therapies,” said Wendy Adams, research grant director, Bay Area Lyme Foundation. “Dr. Smith’s research aims to change this, as it builds on his previous research success in tuberculosis to bring the hope of combination therapies for Lyme to the forefront and seeks to give clinicians and researchers a better understanding of the advantages of combining current FDA-approved treatments in Lyme disease.”

Long COVID: What We Have Learned About Chronic Illness from the Front Lines

By Bay Area Lyme Foundation

BAL Spotlights Series

In this episode of Ticktective, Dana Parish interviews David Putrino, PhD, about the new Cohen Center for Recovery From Complex Chronic Illnesses at Mount Sinai which will focus on the treatment and study of Long COVID, chronic Lyme, and ME/CFS. Dr. Putrino begins by stressing the importance of complete assessment and individualized treatment for complex chronic conditions. He emphasizes the need for improved medical student and provider education to better understand and treat these illnesses.

“Death is not the only serious health outcome from COVID. An acute SARS-CoV-2 infection can absolutely rob you of your previous life as effectively as a severe infection that ends in death as anything else.”

– David Putrino

Putrino addresses the early COVID epidemic and the eventual identification of Long COVID. He discusses Long COVID’s viral persistence and inflammation and therapeutic approaches targeting endothelial dysfunction and platelet hyperactivation. The medical profession’s intractable denial and skepticism concerning these chronic diseases and the need for new diagnostic tools and research funding are also addressed.

Twin Cities Lyme Foundation and Bay Area Lyme Foundation Unite Efforts to Further Advance the Fight Against Tick-Borne Diseases

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Twin Cities Lyme Foundation and Bay Area Lyme Foundation Unite Efforts to Further Advance the Fight Against Tick-Borne Diseases

Twin Cities Lyme Foundation Founder Lisa Najarian and her husband Former CNBC Correspondent Peter Najarian to join the Advisory Board of Bay Area Lyme Foundation

Portola Valley, CA, May 29, 2024 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced it has united efforts with Twin Cities Lyme Foundation (TCLF), a 6-year-old organization focused on raising awareness and aiding in the early detection of Lyme disease throughout Minnesota, to further advance the fight against tick-borne diseases in the Midwest.

“We have long collaborated with Twin Cities Lyme Foundation and are impressed with their work in addition to being grateful for the ongoing partnership, support and efforts of its founders over the past 8 years,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “Our national footprint allows us to identify innovative research throughout the US, particularly on the East and West coasts, and provide valuable information about tick ecology across the country. Uniting our efforts further strengthens our work in the Midwest and creates greater opportunities to advance our mission of making Lyme disease easy to diagnose and simple to cure.”

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

By Bay Area Lyme Foundation

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.

The Myth of the Bullseye: Why Recognizing the Spectrum of Lyme Disease Rashes is Critical for Diagnosis and Treatment

By Bay Area Lyme Foundation

BAL Spotlights Series

Anna Schotthoefer, PhD, a project scientist at Marshfield Clinic Research Institute in Wisconsin, discusses the collection and analysis of a specific subset of blood and urine samples for Lyme Disease Biobank—a Bay Area Lyme Foundation program—from patients diagnosed with tick-borne diseases in the state. Marshfield Clinic serves a large population in Wisconsin and Michigan’s Upper Peninsula, which are highly endemic for Lyme disease. Her Bay Area Lyme-funded study of the Marshfield samples focused on visual documentation of rashes associated with Lyme disease and the challenges in accurately diagnosing the disease based on these rashes. The results highlight the difficulties in recognizing early Lyme: only two of 69 patients presented with the classic bullseye rash that doctors learn is the gold standard for diagnosing Lyme from textbooks. Schotthoefer discusses the variety of different rashes that can result from a tick bite, the characterization of the spectrum of rashes, the need for better Lyme diagnostics, and the ongoing efforts to develop new testing methods using the samples collected in LDB. She expresses optimism that in the next five to ten years, there will be significant advancements in Lyme disease detection, diagnosis, and therapeutics—largely thanks to patients who have contributed samples to LDB for ongoing research.

“The textbooks doctors read in medical school tell them, ‘Look for a bullseye rash; look for the target-like lesion,’ and it turns out that’s wrong. There is a need to continue educating clinicians and providers that Lyme rashes are a spectrum.”

– Anna Schotthoefer, PhD

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