Lyme research Archives - Bay Area Lyme Foundation

Foundational Work Scores Results

By Bay Area Lyme Foundation

BAL 10-year Anniversary Series

10 Years of Collaboration Bringing Hope: How Dr. John Aucott’s Relationship with Bay Area Lyme Helped Get Groundbreaking Biobanks Launched to Fuel the Research Engine of Lyme Disease Investigations

In this blog, part of our 10-year anniversary blog series, we talk with John Aucott, MD, Associate Professor of Medicine at Johns Hopkins University, Director of the Lyme Disease Research Center, about his work and how his investigations are helping us understand persistent/chronic Lyme infections. A long-term collaborator and grant recipient of Bay Area Lyme Foundation, Dr. Aucott reflects on his history with our organization, the ongoing plight of Lyme disease patients, and the slow growth in government funding for investigations into the disease. He talks about the early days of identifying the need for well-characterized samples from Lyme patients and his role in helping launch biobank programs, including his own SLICE Study Biorepository and BAL’s Lyme Disease Biobank.

Bay Area Lyme: I want to take you right back to the very beginning of your relationship with Bay Area Lyme (BAL), the founding of your SLICE study and our Lyme Disease Biobank (LDB) and talk about everything that was happening 10 years ago. People talk about the “norming, storming and forming” stages of organizations, and there was an awful lot of activity going on 10 years ago in the world of Lyme disease. And so, please share your thoughts on what was happening around that time, your part in it, and how you came into the picture with BAL and our biobank.

SLICE Studies — The Study of Lyme disease Immunology and Clinical Events (SLICE), Johns Hopkins University Lyme Disease Research Center

John Aucott: My first memory is that I flew out to California and my agenda at that time was getting people interested in research. There was very little funding for Lyme disease research, and to some extent there still isn’t a great amount of funding for Lyme disease, especially the kind of research I do, which is clinical translational research. I’m an MD, so my research involves bridging basic science to human beings to patients. So, to be very candid about it, I was interested in getting BAL interested in my work. I pitched what we were doing. We had already set up the Johns Hopkins SLICE study, the Study of Lyme disease Immunology and Clinical Events. And at that point it was one of only two large scale biobanks collecting for Lyme disease. The other one is Dr. Gary Wormser’s, who still has a biobank in Valhalla, New York.

So, I was pitching the idea of a Lyme disease biobank to BAL, and this was a whole new concept. A biobank is a hard concept to sell initially because people don’t understand that setting up a biobank is like being Levi Strauss: It’s selling the Levis and the picks, and the shovels—not selling them the actual gold in your pocket. And it’s a hard pitch because people don’t understand that somebody has to supply the foundational work so that other people can mine for the gold. But BAL caught on to the idea that the biobank that we had at Hopkins was a crucial resource that would enable collaboration with other researchers to advance the scientific understanding of disease mechanisms and potentially identify and validate biomarkers for improving diagnostics and treatments.

LymeAid 2013 — LymeAid 2014 Scientific Panel (from left): Wendy Adams, John Aucott, MD, Carin Rollins, and Bill Robinson, MD, PhD

Bay Area Lyme bought into the importance of this idea. The first thing that happened was you asked me to be on the BAL Scientific Advisory Board soon thereafter. BAL expressed support for the SLICE study’s biobank at Hopkins and you actually gave us one of our first grants to help support our biobank work. So, that was the first thing that happened. We applied for a grant, and we got a grant from BAL to help us because we had not yet gotten federal funding for it. So, that was one of the first grants to support it, and now in 2023 we are finally receiving our first NIH funding.

Bay Area Lyme Ambassador Shares Her Story

By Bay Area Lyme Foundation

Guest Blog by Jessica Devine

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.

Bay Area Lyme Foundation Celebrates Its 10th Anniversary with a Convergence of Scientists, Clinicians, Patients and Celebrity Talent

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Celebrates Its 10^th Anniversary with a Convergence of Scientists, Clinicians, Patients, and Celebrity Talent

BAL honors the 2023 Younger Family Emerging Leader Award Winner, announces iHeartRadio partnership and acknowledges the perseverance of patients with persistent Lyme disease

PORTOLA VALLEY, Calif., June 13, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, celebrated its 10^th anniversary in May at LymeAid ®, its preeminent annual fundraising event, and announced Andriy Batchinsky, MD, as the winner of a $150,000 Younger Family Emerging Leader Award. A supportive audience of scientists, clinicians, patients, and philanthropists celebrated progress and commitment to ongoing research into tick-borne diseases, and iHeartRadio announced a partnership in honor of beloved DJ and radio host Jeffrey Vandergrift (“JV”), who passed away with Lyme disease earlier this year. LymeAid raised $683,000 of which 100 percent goes directly to fund scientific research, education, and prevention programs for Lyme disease, a potentially disabling infection that impacts an estimated half a million Americans each year.

Emmy-award winning comedian Dana Carvey, Master of Ceremonies for the event, was joined by The Bacon Brothers and local San Francisco band Pop Rocks, who were the musical guests for this evening of laughter, dining, and dancing to support cutting-edge discoveries and scientific breakthroughs. The fund-a-need for this event was Lyme Disease Biobank, a Bay Area Lyme Foundation program initiated in 2014 to collect and distribute blood, urine, and tissue samples for investigators working on developing diagnostics and treatment for tick-borne diseases.

“This is an amazing time for infectious disease research, offering great hope for patients. While we have made strides, our work is not done. We need to figure out the underlying cause of persistent Lyme disease and find a solution,” said keynote speaker Bill Robinson, MD, PhD, chief of the Division of Immunology and Rheumatology at Stanford University, who shared ongoing research exploring ways to weaponize antibodies against persistent Lyme disease.

On the Front Lines of Lyme Treatment: A Conversation with Pioneer Kenneth Liegner, MD

By Bay Area Lyme Foundation

BAL Spotlights Series

In this conversation between Ticktective™ host Dana Parish and pioneering physician Kenneth Liegner, MD, the discussion focuses on how Dr. Liegner, frustrated and perplexed by the lack of options for persistent/chronic Lyme, came to prescribe disulfiram—a drug intended to treat alcoholics—as an off-label therapeutic for his Lyme patients. He recounts what happened next, and reflects on the impact of his bold experiment, plus they touch on how a Covid infection may impact Lyme patients, causing a resurgence of latent symptoms. They also explore the history of tick-borne diseases and the lack of recognition among clinicians, the government, and insurance companies for these insidious infections that cause chronic suffering for many. 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: I’m so thrilled to be guest hosting Ticktective for you today on behalf of Bay Area Lyme Foundation. I’m here with a dear friend and a brilliant Lyme physician, internist, author, Dr. Kenneth Liegner. Dr. Kenneth Liegner is a board-certified internist with additional training in pathology and critical care medicine, practicing in Pawling, New York. He’s the author of an extraordinary documentarian history of Lyme called In the Crucible of Chronic Lyme Disease, Collected Writings and Associated Materials. We’ll talk about that more later. Dr. Liegner is also the first to apply disulfiram in the treatment of Lyme, and he published his experience in the peer-reviewed journal Antibiotics. Thank you so much for being here with me today, Dr. Liegner.

ALL ABOUT KIDS WITH LYME, PANS, MOLD ILLNESS

By Bay Area Lyme Foundation

BAL Spotlights Series

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: 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!

Bay Area Lyme Foundation Researcher Validates New Approach to Overcome Challenges of Lyme Disease Diagnosis in the Lab

Artem Rogovskyy, PhD, DVM, receiving the ELA award at LymeAid

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Researcher Validates New Approach to Overcome Challenges of Lyme Disease Diagnosis in the Lab

Using samples from the Lyme Disease Biobank, Raman spectroscopy is identified as a potentially more sensitive test for diagnosing Lyme disease

Portola Valley, CA, February 9, 2023 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of a laboratory study published in the peer-reviewed journal Frontiers in Cellular and Infection Microbiology that identifies Raman spectroscopy as a promising diagnostic approach for Lyme disease, a condition that affects nearly 500,000 new patients annually. Conducted by one of Bay Area Lyme Foundation’s Emerging Leader Award winners, Artem Rogovskyy, PhD, DVM, along with researchers from Texas A&M University, the study identified Borrelia infection with 88% accuracy, 85% sensitivity, and 90% specificity using Raman spectroscopy, a light-based test commonly used in chemistry labs, to evaluate human blood samples provided by Bay Area Lyme Foundation’s Lyme Disease Biobank.

“By identifying a unique spectrum fingerprint to detect Lyme borreliosis faster, Raman spectroscopy has the potential to diagnose the disease earlier,” said Dr. Rogovskyy, associate professor of Veterinary Pathobiology at the School of Veterinary Medicine and Biomedical Sciences at Texas A&M University. “We hope that developing an effective, robust, and rapid diagnostic test will help overcome current challenges in Lyme disease diagnosis.”

The study aims to address the immediate need for more sensitive diagnostics in Lyme disease as the current gold standard diagnostic has been shown to be insensitive in up to 60% of early-stage patients and up to 30% of late-stage patients.

“The lack of an accurate diagnostic test is not only a challenge for clinicians trying to properly diagnose and treat patients, but also makes clinical trials for new treatments difficult,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “Our hope is that new approaches like this one will allow for early detection and treatment of all patients with Lyme disease.”

New Study Finds American Dog Tick Populations Expanding into Colorado, and Identifies Rocky Mountain Wood Ticks in 5 More Counties Than Documented by CDC

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

New Study Finds American Dog Tick Populations Expanding into Colorado, and Identifies Rocky Mountain Wood Ticks in 5 More Counties Than Documented by CDC

Citizen scientists contributing to Bay Area Lyme Foundation’s Free Tick Testing program assist in identifying ticks capable of carrying disease in Colorado

Portola Valley, CA, October 25, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of a study published in the November issue of the peer-reviewed journal Ticks and Tick-borne Diseases demonstrating that ticks capable of carrying diseases, including Rocky Mountain spotted fever, Colorado tick fever and the neurotoxin that causes tick-borne paralysis, pose an emerging threat in Colorado. The results show American dog ticks are very much present in 16 counties in Colorado, where they were not previously identified by the CDC, and Rocky Mountain wood ticks are found in 38 of the 64 Colorado counties, whereas they had only been identified in 33 previously. The study leveraged several sources for the study, including ticks collected by citizen scientists as part of a free tick testing program offered by the Bay Area Lyme Foundation.

“The critical takeaway from this study is that Coloradans need to take preventative measures against ticks when outdoors, such as tick checks, and doctors should be more vigilant for symptoms of tick-borne diseases including those carried by Rocky Mountain wood ticks and American dog ticks,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “This ecology study illustrates the power of leveraging citizen science, and we are grateful for the more than 20,000 ticks that were submitted to our national program and made this study possible.”

Conducted by researchers from Colorado State University and funded by the Bay Area Lyme Foundation, the study aimed to quantify the current county-level distribution of Rocky Mountain wood ticks, Dermacentor andersoni, and American dog ticks, Dermacentor variabilis. The study evaluated data from ticks collected by citizen scientists and evaluated at Northern Arizona University as part of Bay Area Lyme Foundation’s Free Tick Testing program, distribution data from the Colorado Department of Public Health and the Environment, veterinary surveillance at Oklahoma State University, and literature data.

Bay Area Lyme Foundation Offers $150,000 Grant for Emerging Leaders in Lyme Disease Research

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Offers $150,000 Grant for Emerging Leaders in Lyme Disease Research

Annual award seeks to attract innovative researchers with a new approach to overcome the challenges of tick-borne diseases

PORTOLA VALLEY, Calif., October 19, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2023 Emerging Leader Awards (ELA), which aim to recognize both established and up-and-coming researchers bringing new approaches and creative thinking to the field of Lyme disease. This year, the Foundation has increased the ELA award to $150,000 for researchers in academia or the private sector who are at the post-doctoral level through associate professor level.

While applicants must have a defined approach to improving diagnostics and therapeutics for Lyme disease, the grants are open to those who have previously worked in Lyme disease research as well as researchers from other therapeutic areas. Applications will be accepted through February 15, 2023 at 11:59pm, Pacific Time. The full criteria and application for this award can be found at https://www.bayarealyme.org/our-research/emerging-leader-award/.

“Despite modest increases in government funding, there is still a significant need for ‘out of the box’ ideas pulled from proven scientific approaches in other therapeutic areas,” said Wendy Adams, research grant director Bay Area Lyme Foundation. “We fund innovative scientifically-sound research and are seeking driven, rigorous scientists who can help make progress towards developing accurate diagnostic tests and effective therapeutics for various stages of the disease.”

The Emerging Leader Award is designed to support research that will increase the scope of investigation in Lyme disease and help develop better diagnostics and treatments. Bay Area Lyme Foundation encourages researchers to explore novel, scientifically well-founded concepts with potential utility toward that goal. Many ELA recipients have subsequently received grants from other groups including the NIH, as well as continued support from Bay Area Lyme Foundation. The efforts funded by this award are required to generate initial proof of concept within 12-24 months and requires applicants to demonstrate professional and scientific leadership in the biomedical sciences and a strong supporting scientific rationale.

Patient Participation is the Key to Research Gains

Biobank collection at Gordon Medical Associates

By Bay Area Lyme Foundation

BAL Leading the Way Series

“With the lack of government initiative to make Lyme and tick-borne diseases easy to diagnose and simple to cure, it’s up to organizations like Bay Area Lyme and Lyme Disease Biobank to expand our understanding of tick-borne diseases.” –Harrison S., LDB participant

“I participated in the Biobank program because I want to support legitimate science—it’s the compass pointing us in the direction that will lead to better diagnostics and therapeutics for Lyme patients. I am grateful that BAL is funding this critical research which is so sorely needed, and doing it expeditiously. It goes a long way to make up for the five decades of inaction by the CDC and HHS.” – Rebecca W., LDB participant

Over three days in June, the Lyme Disease Biobank (LDB) welcomed participants to Gordon Medical Associates, our LDB collection site in San Rafael, CA. Persistent/chronic Lyme patients traveled from as far away as Sacramento, CA, and Reno, NV, to donate blood and urine samples to the Biobank. LDB, a program of Bay Area Lyme Foundation, was founded to ensure an adequate number of samples for researchers investigating Lyme and tick-borne diseases.

Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

Winners Nichole Pedowitz PhD, of Stanford University and Peter Gwynne PhD, of Tufts University will focus on developing novel diagnostic tests that can identify patients with Lyme disease

PORTOLA VALLEY, Calif., August 9, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the recipients of the 2022 Emerging Leader Awards (ELA), which are designed to support promising scientists who are advancing development of accurate and effective diagnostic tests. Both awardees this year are focused on diagnostics, which is particularly important as the current gold standard diagnostic test has been shown to be insensitive in up to 60% of early-stage disease.

This year’s winners are Nichole Pedowitz, PhD, of Stanford University, who will receive $100,000 for her work to develop a new rapid diagnostic to directly test for the bacteria that causes Lyme disease and Peter Gwynne, PhD, of Tufts University, who will receive $100,000 to further identify antibodies which may be markers of persistent Lyme disease infection.

“The lack of a reliable test for Lyme disease makes it not only impossible to ensure that patients receive prompt, appropriate care but also challenging for scientists and clinicians to evaluate emerging treatments,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “Our hope is that Drs. Pedowitz and Gwynne will make strides toward the development of diagnostic tests that will be effective in identifying Lyme patients at various stages of the disease.”