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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.

The Long and Winding Road: The Story of Bay Area Lyme’s Multi-Year Quest to Identify Treatments for Lyme Patients

By Bay Area Lyme Foundation

BAL Leading the Way Series

“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.

Bay Area Lyme Co-Founder Bonnie Crater

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.

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

Ticktective Podcast Transcript

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.

Bay Area Lyme Foundation Celebrates Department of Defense CDMRP Tick-borne Disease Awardees

By Bay Area Lyme Foundation

Bay Area Lyme Foundation Celebrates Department of Defense CDMRP Tick-borne Disease Awardees

Projects of three awardees to be enabled by Lyme Disease Biobank samples

PORTOLA VALLEY, Calif., March 23, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces that two projects it has previously funded have now received Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Tick-Borne Disease awards. Three of the six recently announced CDMRP awardees will be using biological samples from Bay Area Lyme Foundation’s Lyme Disease Biobank to enable their research into diagnostics and therapeutics for tick-borne diseases, including Lyme disease—which infects half a million people each year.

“Government awards like CDMRP help propel much needed research on tick-borne illnesses forward, and, with three diagnostics projects using Biobank samples, we are honored to play a part in making this important research possible,” said Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, which provides researchers with access to reliable biological samples to enable research toward better diagnostics and treatments for these complex diseases. “If researchers don’t have access to well-characterized blood samples with robust testing and medical information, they can’t build the necessary research programs to develop better diagnostics, which are urgently needed for these complex diseases,” added Dr. Horn.

ALL ABOUT KIDS WITH LYME, PANS, MOLD ILLNESS

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

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!

One Lyme Patient’s Challenging Quest to Donate Her Body to Science in Her Final Days

By Bay Area Lyme Foundation

BAL Spotlight Series

In Puerto Rico, Donating Your Body to Science is Almost Impossible

Luisette Mauras Rodriguez working in the lab at Cornell — Working in the lab at Cornell in 1997

Luisette Mauras Rodriguez is lying in bed at home in Guyana, Puerto Rico, waiting to die. She’s 46 years old, her body ravaged by Lyme, numerous tick-borne coinfections, and a multitude of other hits caused by environmental exposure to toxins like black mold, fungus, mycoplasma, and chikungunya virus. Family members do not understand her illness and laugh at her ‘exaggerations.’ Her husband left her because he fears getting sick and his religious convictions cause him to question the validity of her condition. Her mother, formerly a registered nurse, has abandoned her to her fate. Whenever Luisette gets desperate for help and goes to the ER, they refer her to the psych ward saying her illness is fabricated.

Cornell University and the surrounding woods where she was bitten

A former professional lab technician who worked in pharmaceutical development with US companies like Wyeth, SmithKline Beecham, and IPR Pharmaceuticals, Luisette has one dying wish: to donate her body to the Lyme Disease Biobank (LDB) so that samples from her brain, joints, organs, and tissues will be used to fuel much-needed research into Lyme and tick-borne diseases. She has registered with the National Disease Research Interchange (NDRI) in Philadelphia to have her body collected after her death, but as of writing this article, staff there are unable to find any medical professional on the island willing to partner with them to ensure this happens.

“We have been unsuccessful in securing anyone for recovery for the donor located in Puerto Rico. It has been very difficult getting anyone to follow up with us on top of the language barrier. We were trying to give the pathology department at the University time to get back to us but they seem to be very busy. The complexity of the recovery also makes it more difficult as well.” — Wauchita Green, Manager, Organ & Tissue Source Sites, NDRI, The National Disease Research Interchange

Ticktective with Dana Parish: On the Front Lines of Lyme Treatment—a Conversation with Pioneer Kenneth Liegner, MD

By Bay Area Lyme Foundation

Ken Liegner, MD

Dana Parish interviews Dr. Kenneth Liegner, a Board Certified Internist practicing in Pawling, New York. He has been on the front lines of treating chronic Lyme and related infections since 1988. He has published in peer-reviewed scientific journals and is the author of In the Crucible of Chronic Lyme Disease—Collected Writings & Associated Materials.

To read the podcast transcript, click here.

Watch Now

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.”

The Misunderstood Infection that is Wreaking Havoc

Ticktective with Dana Parish and Edward B. Breitschwerdt, DVM, DACVIM, PhD

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

In this wide-ranging conversation, Dana Parish talks with eminent veterinarian Dr. Edward Breitschwerdt about Bartonella infections, the diseases and symptoms presentations in humans, how the bacteria are transmitted, and how doctors often miss Bartonellosis as the root causes in sudden onset of psychosis, frightening behavioral changes, and inexplicable physical deterioration in humans. 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 nonprofit foundation based in Silicon Valley, and thanks to a generous grant that covers a hundred percent of our overhead, all your donations go directly to our research and our prevention programs. For more information about Lyme disease, please visit us at us at bayarealyme.org.

Hi, I’m Dana Parish, and I’m so honored to be the guest host today for the Ticktective Podcast on behalf of Bay Area Lyme Foundation, of which I am a very proud advisory board member, and we are thrilled to welcome Dr. Ed Breitschwerdt today. He is the Melanie S. Steele, Professor of Medicine and Infectious Diseases at North Carolina State University College of Veterinary Medicine. He is also an adjunct professor of medicine at Duke University Medical Center. And we could read a bio for you that goes on forever because you are so incredibly distinguished. You’re the world’s leading expert, in many people’s opinions on, Bartonella, which is one of the main reasons that we’ve been brought together to talk here today. Thank you so much for agreeing to do this podcast and for being such an incredible ally and champion for this cause and this community and such a diligent, brilliant researcher and personally a friend. I really appreciate you, Ed. Thank you for being here. How did you get into this? A world of Bartonella?

Dr. Edward Breitschwerdt: I became a member of the American Society of Rickettsiology as a veterinary internist trying to understand Rickettsia. I was welcomed by members of the organization and a Rickettsiologist at CDC, Dr. Russ Regnery, at one of the national meetings, presented an abstract. That abstract was to tell us as an audience that they had finally found the organism that caused cat scratch disease. And that organism was a Bartonella that became Bartonella henselae, a bacteria. The thing I always liked about Dr. Regnery is he was a very basic microbiologist and Rickettsiologist, and I was a clinician trying to understand the basic concepts of these bacteria and the diseases they cause. So, the next morning we actually ended up having breakfast at the same table when I asked him how difficult Bartonella was to isolate, and he said: ‘If I could find three feral cats in Raleigh, I could come up with at least one and probably two isolates,’ which really says anybody that is very kind, very benevolent and out there feeding and getting scratched by feral cats, really needs to be careful. So, we knew that fact 30 years ago, when Bartonella henselae was first (discovered). So, the initial research in our laboratory focused on Bartonella and cats.