Making a Contribution and Feeling Heard—One Lyme Patient’s Experience of Participating in the Lyme Disease Biobank

Lyme Disease Biobank Collection

BAL Spotlights Series

 

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.

Functional Medicine and How it Can Help Lyme Patients, Long Covid Patients, and Firefighters

Ticktective Podcasts

Sunjya Schweig, MD

Sunjya Schweig, MD is the president and co-founder of the California Center for Functional Medicine in the San Francisco Bay Area. One of his Johns Hopkins studies on herbal medicines for Lyme disease was in the top 1% of viewed articles on Frontiers in Medicine. He explains the basics for functional medicine and how he uses it with tick-borne disease patients, first responders, and long Covid patients. Ticktective Video and Podcast Editor: Kiva Schweig.

Bay Area Lyme Foundation Launches Ticktective™ Podcast

Ticktective Podcasts

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Launches Ticktective™ Podcast

PORTOLA VALLEY, Calif., September 30, 2020 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the launch of the Ticktective podcast and video series.  Ticktective is a Bay Area Lyme Foundation program designed to investigate the latest scientific knowledge and advances in Lyme and tick-borne diseases. The podcast offers insightful discussion with researchers, physicians, patients, and thought leaders in the field.

“Because the science surrounding tick-borne disease is so complex and there are so many unanswered questions, Ticktective aims to share firsthand perspectives about the challenges of Lyme in ways that will intrigue more scientists, physicians and patients to join our battle towards making Lyme disease easy to diagnose and simple to cure,” said Linda Giampa, executive director, Bay Area Lyme Foundation.

There are more than 400,000 people diagnosed with Lyme disease each year in the US, and millions of Americans live with persistent Lyme disease (PLD) caused by an ongoing bacterial infection. The current “gold standard” diagnostic for Lyme disease misses up to 60% of cases of early stage Lyme disease, and if not treated promptly, Lyme may progress to a debilitating stage, becoming difficult, or impossible, to cure. Bay Area Lyme Foundation has funded over 100 research projects at 37 institutions across the US in a mission to find solutions for these patients.

Lyme Persistence and COVID “Long-Haulers”

Dana Parish

Bay Area Lyme Foundation Advisory Board Member, “Chronic” co-author and SonyATV singer/songwriter, Dana Parish, shares her perspective on chronic diseases, autoimmunity, COVID-19, and speaking out in the face of adversity. “Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again” is available for purchase on Amazon here. Ticktective Video and Podcast Editor: Kiva Schweig.

Bay Area Lyme Foundation Tick Testing Program Adds Bartonella Pathogen Assay

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Tick Testing Program Adds Bartonella Pathogen Assay

Nationwide Free Tick Testing Initiative Will Inform Citizen-Science Studies to Better Understand the Spread of Ticks Carrying Diseases Throughout U.S.

Silicon Valley, CA, July 11, 2019 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the relaunch of its nationwide free tick testing program, which will include an assay for Bartonella, a disease-causing pathogen carried by ticks. Based on the success of the Free Tick Testing Citizen Science program, Bay Area Lyme Foundation has significantly increased funding for the 2019 nationwide collection effort, adding an automated submission process and increased research support. Researchers anticipate this citizen- science program will enable the organization to unearth further discoveries.

Results of the first citizen-scientist study were published in the peer-review journals PLOS ONE in 2018, and International Journal of Health Geographics in 2019. The study, which evaluated the prevalence of disease-carrying ticks throughout the United States, and included a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico, led to the discovery of ticks capable of carrying Lyme and other tick-borne diseases in 83 counties, in 24 states, where these ticks had not been previously recorded. The program received a six-fold increase in tick submissions over initial estimates, representing unprecedented national coordination of a ‘citizen science’ effort and diagnostic investigation.