Lyme and tick-borne diseases are serious issues in Marin. Almost anyone you talk to knows someone with Lyme. Infected ticks are active in many of Marin’s open spaces and recent CDC estimates suggest that up to 500,000 people get Lyme disease annually in the US. And in up to 30% of cases, even after treatment for early Lyme disease or early Lyme symptoms, people still experience persistent/chronic symptoms.
But hope is being provided by a local nonprofit — Bay Area Lyme Foundation — about to celebrate its 10-year anniversary as the nation’s leading public charity sponsor of Lyme disease research.
Bay Area Lyme Foundation was formed in 2012 by two moms in Portola Valley. Their lives and the lives of people they loved had been derailed by Lyme disease. Told over and again by doctors, “there’s no Lyme in California,” they knew this was incorrect and were determined to change things. They agreed the mission of Bay Area Lyme Foundation should be to make Lyme disease easy to diagnose and simple to cure.
Much has been accomplished since Bay Area Lyme was founded, and one of its central projects is the Lyme Disease Biobank (LDB). A biobank, or biorepository, stores human biological samples like blood and tissue for use in future research. The LDB was created in 2015 because medical researchers were unable to access the human blood, urine, and tissue samples needed. This lack of samples made it extremely difficult to conduct research on new diagnostics and treatments for Lyme and tick-borne diseases. To date, LDB has enrolled more than 1,000 participants nationwide, and LDB samples have supported over 70 research projects in academia and industry.
Marin resident Carolyn Margiotti came to Bay Area Lyme looking for answers when her own physicians couldn’t provide them. Margiotti, who found an engorged tick and suffered a myriad of seemingly unrelated symptoms, was told by her doctors that nothing was wrong with her, as the tests were negative. An athlete who had been healthy her whole life, Margiotti couldn’t figure out why her diagnosis wasn’t adding up. Now a Bay Area Lyme ambassador, she encourages other Marin residents who suffer from persistent Lyme to get involved.
“The Lyme Disease Biobank is a really important project. Providing samples to researchers will lead us to answers so we can diagnose and treat people suffering from persistent Lyme. A steady flow of samples into the Biobank will drive vital research forward,” says Ms. Margiotti. “By participating in the study, people suffering with Lyme can assist researchers who are developing ways to help Lyme disease patients.”
If you suffer from persistent/chronic Lyme disease, please consider participating in this research project with the Lyme Disease Biobank (LDB) at Gordon Medical Associates, LDB’s collection site in San Rafael. People interested in joining the study complete a short prescreening questionnaire and if selected to participate, they will go to Gordon Medical Associates to donate a small sample of blood. Participants receive a $50 Amazon gift card as thanks.
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