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.
“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.
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.”
In Puerto Rico, Donating Your Body to Science is Almost Impossible
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.
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
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
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
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.
In June of this year, Lyme Disease Biobank (LDB), led by Principal Investigator Liz Horn, PhD, MBI, conducted sample collection days at our partner site, Gordon Medical Associates, in San Rafael, CA. During the two-day event, we took the opportunity to sit down and talk with participants, hear their Lyme disease stories, and learn what motivated them to donate blood and urine samples to LDB.
Sarah Reid’s Lyme story is not dissimilar to the stories of many Lyme patients in California. She never saw a tick; she never had a rash; and for a very long time—despite countless doctors’ appointments, interventions, tests, and hours of research—she had absolutely no diagnosis for her bewildering kaleidoscope of symptoms. When she finally received confirmation from lab tests ordered by Gordon Medical Associates that she indeed had Lyme and Bartonella, the news was a massive relief initially. She finally had answers. However, as the diagnosis sunk in, it sparked reflection on her lifelong health struggles and launched her into a new world of confusion, frustration, and decision-making as she learned to navigate and manage her Lyme.
“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
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.”