A new type of Lyme disease test aimed at early-stage infection detection is hitting doctors’ offices, and we all should thank Lyme patients for making this happen. This test named T-Detect Lyme™, was recently unveiled by Adaptive Biotechnologies, and is an advanced indirect-detection blood test that allows for detection of an acute Lyme infection earlier than antibody response tests.
Our Lyme Disease Biobank (LBD) and Dr. John Aucott’s SLICE Lab at Johns Hopkins University provided the Lyme patient blood samples for Adaptive’s new T-Detect Lyme™ test development. The LBD, a program of Bay Area Lyme, was created in 2014 and began collecting patient samples in 2015 specifically to drive this form of diagnostic innovation. By engaging Lyme patients and providing well-characterized samples to approved researchers and partnering with innovative organizations like Adaptive, the LDB research engine is now delivering long-planned-for results.
“This breakthrough from Adaptive validates the power of patient-driven research. Without the participation of patients who gave blood to our Lyme Disease Biobank, this impactful new test could not have been developed,” commented Linda Giampa, executive director, Bay Area Lyme Foundation. “We wish to thank all the patients who came forward to participate in this important program and to encourage others to give samples.”
How a chance meeting and the harnessing of big data led to a research initiative that’s finding answers in Lyme and tick-borne disease
Many different groups comprise the Lyme disease community including patients, their families, healthcare providers, researchers and nonprofit organizations. These nonprofit organizations and foundations may differ in size, structure, fiscal basis, focus and approach, but in one important aspect they are united: the search for answers.
This search for answers in the realm of Lyme and tick-borne diseases has served as a unifying driver, even when dissent and controversy has sometimes fragmented the Lyme community. And despite what seems to be a constant uphill battle for recognition and legitimacy of Lyme and tick-borne infections, many believe that we’re on the brink of major breakthroughs to help patients and doctors unlock the medical mysteries that make these infectious diseases so confounding. Two people cautiously optimistic about where we are in the search for answers about Lyme are Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, and Lorraine Johnson, JD, MBA, Chief Executive Officer, LymeDisease.org and Principal Investigator MyLymeData.
Promoting tick bite prevention and educating everyone about the serious health impacts of tick-borne diseases has been a consistent objective for Bay Area Lyme Foundation. After all, although the foundation’s mission is to make Lyme disease easy to diagnose and simply to cure, it would be so much better if nobody ever got bitten by an infected tick in the first place. But as ticks continue to proliferate and the number of people impacted by Lyme and tick-borne diseases grows, the need for tick bite prevention and education escalates accordingly. That’s why the foundation is excited about its three-year partnership with the American Junior Golf Association (AJGA), and an upcoming announcement with PGAJR, as they provide an unprecedented opportunity to reach thousands of young athletes and their families.
But why are golf courses high risk locations for tick bites? After all, the fairways are mown regularly, and golfers are typically walking around on grass that is short and frequently tended. Surely hiking, mountain biking and running in areas where trails are overgrown and you’re outside at times when infected ticks are most active would be higher risk?
Remember when we used to watch Captain Kirk talk into his chirping communicator and order Scotty to beam him up? And what about that handy medical scanner the size of a pack of cards that Dr. McCoy waved around to assess and diagnose his patients in the starship’s sick bay? We may now all have smartphones to stay in constant touch with each other, but outside of a state-of-the-art hospital with multi-million-dollar scanners and MRI machines, we are still some years away from the Star Fleet’s instantaneous medical technology, right?
Advances in our ability to gather real-time information on the human body are poised to revolutionize not just how we diagnose diseases, but make dramatic, life-altering, positive impacts on the critical timeline for diagnosis and treatment by detecting a disease event before symptoms occur. And Bay Area Lyme is leading the way by investing in research that will further illuminate our understanding of how—in real time—a Lyme infection impacts the human body through the data collected by wearable technologies.
Dan Wolff “Tick Man Dan”, the founder and president of TickEase tweezers, the only patented, CDC-compliant, two-sided tweezer created expressly for removal of embedded ticks from people and pets.. He discusses his invention, what to do when you find a tick, ecology of ticks, and how Tony Fauci ended up at his bar mitzvah. Ticktective Video and Podcast Editor: Kiva Schweig.
Calling All Scientists: Bay Area Lyme Foundation Now Accepting Applications for 2022 Emerging Leader Award
Grant aims to inspire new research for the diagnosis and treatment of Lyme disease
PORTOLA VALLEY, California, December 6, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2022 Emerging Leader Awards (ELA), which recognize U.S. researchers from academia or the private sector who bring new approaches to the field of Lyme disease and embody the future of Lyme disease research leadership. At least two grants in the amount $100,000 each will be awarded. Proposals must have a defined scientific approach and rationale that can advance diagnostics or treatments for Lyme disease, and applicants are encouraged to bring innovative learnings from other therapeutic areas to their research projects. Applications will be accepted through March 15, 2022, at midnight Pacific Time. The full criteria and application for this grant award can be found here.
“The world is seeing firsthand the damage that infections can cause—both in acute and chronic forms. Just has COVID has encouraged collaboration, we hope that existing Lyme scientists as well as scientists from other disease areas will apply for this grant, offering new hypotheses and technologies to diagnose and treat Lyme and other tick-borne disease,” said Wendy Adams, research grant director, Bay Area Lyme Foundation.
Why is the human immune system so complicated? Why are Lyme and tick-borne diseases so challenging for medical scientists to understand and for doctors to treat? And what is happening in the world of Lyme disease research that may offer hope to patients suffering from the effects of Lyme and TBDs on their continually assaulted immune systems?
On November 3, Bay Area Lyme Foundation and Sanford Burnham Prebys Medical Discovery Institute jointly hosted an audience of physicians, scientists, patients, supporting family members, and medical providers in La Jolla, CA, to hear a panel of distinguished speakers address the subject of how the human immune system responds to the bacterial or viral assault of a tick-borne infection.
The San Diego event was part of Bay Area Lyme Foundation’s ongoing Distinguished Speaker Series. The Speaker Series format brings together a panel of distinguished individuals, typically including a researcher, a physician, and a Lyme patient advocate. By giving varied perspectives on topics relevant to Lyme and tick-borne diseases (TBDs), Bay Area Lyme provides a platform for the discussion of new scientific discoveries and other developments relevant to Lyme. The series also fosters community-building for patients seeking answers to the challenges of this debilitating disease.
Part of this session’s discussion explored the frustration experienced by countless Lyme patients that most medical providers and physicians are so poorly educated regarding Lyme and TBDs. “They don’t test for all types of TBDs, don’t agree on treatments, aren’t trained to recognize or treat heart problems caused by TBDs, and over-prescribe powerful immune suppressants which can be deadly for TBD patients,” criticized David Haney, PhD, biochemist, patient advocate and panelist. “San Diego physicians are under the mistaken impression that there is no Lyme disease in California, but it has been established in the state since the 1970s. People also travel, and a tick-borne infection is more than just Borrelia burgdorferi. This has been proven in multiple studies,” he added. “Academic studies show that Babesia duncani and several species of tick-borne Borrelia are more prevalent in the West than the East.”
“Traditional healthcare needs to learn to diagnose and treat tick-borne diseases,“
Citizen Scientist Study Fuels Launch of First Series of Interactive U.S. County Maps of Ticks Carrying Diseases
– Study finds ticks carrying disease-causing bacteria in 116 counties where they have not been previously documented by CDC –
PORTOLA VALLEY, CA, October 20, 2021—Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the U.S., today announced the launch of interactive national tick maps of U.S. counties based on data published in mSphere, a multidisciplinary open-access journal of the American Society for Microbiology. The new data identify Ixodes ticks carrying disease-causing pathogens in 116 counties which were not previously identified by the Centers for Disease Control (CDC).
“The area known to harbor disease-carrying ticks continues to expand, and we hope people across the US will use these interactive maps to learn more about the risks for their hometowns, their family’s residences and vacation spots,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “The citizen scientists contributing to this study allowed the country’s collective tick knowledge to advance further than even the CDC could do at this time. Gaining the support of citizen scientists allowed us to collect from many counties across the country where ticks are not usually collected and tested, or they are not tested for these pathogens.”
Daniel Kinderlehrer, MD is the author of Recovery from Lyme Disease: The Integrative Medicine Guide to the Diagnosis and Treatment of Tick-Borne Illness. He is also the author of several review articles in medical journals and the Lyme Times. Dr. Kinderlehrer attended Tufts Medical School and is an internal medicine physician. He co-founded the New England Center for Holistic Medicine and has a private integrative medicine practice in Denver, Colorado, where he treats patients with tick-borne illnesses. Ticktective Video and Podcast Editor: Kiva Schweig.
Ally Hilfiger, film producer, fashion designer, businesswoman, reality TV star, daughter of fashion mogul Tommy Hilfiger, Lyme advocate, and author of the book “Bite Me” shares her personal experience with tick-borne diseases and her path to healing. Ticktective Video and Podcast Editor: Kiva Schweig.