Lyme disease, particularly with chronic or late-stage symptoms, can be a horribly frustrating and debilitating illness. Symptoms can persist despite complicated treatment regimens; therapies that seem successful at first may become less effective over time; and medications that work for some appear to have no effect for others. Add to that the high cost of treatment, the complicating challenges of co-infections, and insufficient insurance coverage for both traditional and alternative treatment, and it quickly becomes apparent why clinical studies offer potential for patients who are still suffering.
For many patients, the promise of participating in a clinical trial is not just the hope for new discoveries but a more immediate opportunity to access treatment options they may not otherwise be able to secure or afford. But is clinical research the “holy grail” for these patients who are seeking another option? What are the pros and cons of clinical research? What do you need to know?
By Jo Ellis, Education Outreach, Bay Area Lyme Foundation
On Wednesday, March 8, Dr. Sunjya Schweig and his wife, Lia Gaertner, together gave a deeply affecting and informative presentation sharing their personal and professional experiences with Lyme disease. The talk was part of the ongoing Distinguished Speaker Series. What follows is a synopsis of some of the highlights.
Lia Gaertner, a member of the Bay Area Lyme Foundation Science Committee, and Dr. Schweig, who is on the foundation’s Advisory Board, bring a wealth of professional expertise and knowledge to the table. But their story starts on a personal note, for it was just one month after Dr. Schweig started working in private practice that Lia — after 10 years of battling serious illness, unexplained symptoms, and debilitating physical and mental challenges — was finally diagnosed with Lyme disease. Together, the couple took what they describe wryly as a “rapid descent together down a rabbit hole” – a deep dive into Lyme, trying to learn as much as possible for their survival.
Following on our story about financial resources for Lyme patients, we received this submission from Eric Minghella, an Outreach Coordinator for the Disability Benefits Help Center, offering to help clarify the process of applying for coverage.
“I came across the Bay Area Lyme Foundation this morning and I was so impressed by the work you do for people who have been affected by Lyme Disease. The resources and awareness you provide for families in need are so valuable and very much needed. I was wondering if I could contribute to the Bay Area Lyme Foundation by writing an article on applying for Social Security benefits with Lyme Disease. I work for Disability benefits help and I know that the process can be very confusing.”
As many know, treatment for and recovery from Lyme disease can be a long and costly process for those who suffer chronic symptoms. Applying for financial support can be a perplexing and tiresome endeavor, however, there are resources to assist you and you may find answers here.
Bay Area Lyme Foundation Announces Winners of “Lyme Innovation” Hackathon at White House Event
White House Acknowledges Contributions of Program Organizers
Toward Solving Challenges of Lyme Disease
(Cambridge, MA,) October 5, 2016 — As part of the White House Open Data Innovation Summit, Bay Area Lyme Foundation, collaborating with the Spaulding Rehabilitation Network’s Dean Center for Tick Borne Illness, Harvard Medical School Department of Physical Medicine and Rehabilitation, MIT Hacking Medicine, University of California, Berkeley, and the Veterans Affairs Center for Innovation, announces the winning teams of Lyme Innovation.Lyme Innovation is the first ever Hackathon for Lyme disease, which provided a forum for more than 100 scientists, clinicians, researchers, entrepreneurs, and investors from a variety of disciplines to brainstorm solutions for this potentially devastating disease.
This week’s presentation was just that — a moving discussion of Jordan’s personal experience and reflections battling Lyme disease, what he describes as the toughest 9 1/2 years and biggest struggle of his life (and this from a man who nearly lost his life during blizzard conditions on the top of Mt. Shasta!).
Bay Area author and noted documentary filmmaker Eliza Hemenway recently turned her journalistic eye toward her own family to document a notably personal and tryingly poignant story about her family’s trials with Lyme disease and the baffling enigma that surrounds the illness and its treatment. Her daughter, Katherine, just seven years old when infected, suffered for years before successfully being diagnosed. And even after diagnosis, the family struggled to get the care they needed.
“I am a Bay Area mother who wrote Paris in Oakland to be a story of hope and encouragement to the Lyme community, something I desperately needed when my daughter was first diagnosed and I was trying to understand the controversies and confusion surrounding Lyme.
Experts Hack for Lyme Disease Solutions in Boston and Berkeley
Bay Area Lyme Foundation Supports the First Hackathon for Lyme Disease to Inspire Innovation
Silicon Valley, CA, April 18, 2016— To inspire innovation to help solve the challenges of Lyme disease, Bay Area Lyme Foundation, collaborating with the Spaulding Rehabilitation Network’s Dean Center for Tick Borne Illness, Harvard Medical School Department of Physical Medicine and Rehabilitation, MIT Hacking Medicine, University of California, Berkeley, and the Veterans Affairs Center for Innovation, is supporting Lyme Innovation, the first ever Hackathon for Lyme disease, a potentially devastating condition newly infecting 329,000 people each year. Scientists, clinicians, researchers, entrepreneurs, and investors from both U.S. coasts participated in this innovative event, which kicked off this weekend, and will continue in Cambridge June 17 – 19, at the Microsoft Nerd Center.
California Strains of Lyme Bacteria May Survive Antibiotic Treatment, According to New Study
This new study funded by Bay Area Lyme Foundation identifies 20 FDA-approved compounds that are more effective in inhibiting persistent Lyme bacteria than standard treatment
Silicon Valley, CA, April 6, 2016—A laboratory study published today, funded by the Bay Area Lyme Foundation, is the first study to demonstrate that strains of Lyme bacteria present in California ticks are able to form persister bacteria, which do not respond well to treatment.The study is also the first to identify FDA-approved therapies that may be more effective in inhibiting these specific strains of persister bacteria in the lab than doxycycline, the most commonly prescribed treatment for Lyme disease. The study was conducted by Stanford School of Medicine researchers and published in the Open Access publication Drug Design, Development and Therapy. View full study here:http://www.dovepress.com/articles.php?article_id=26319
Reflections from a Promising Dialogue at the AAAS Conference in Washington, DC, November 17-18
by Lia Gaertner, BAL Science Committee
Some weeks ago, two members of the Bay Area Lyme Foundation Science Committee, Wendy Adams and Lia Gaertner, attended a leadership symposium in Washington, DC, sponsored by the American Association for the Advancement of Science (AAAS) and entitled, “Innovations-X: Rising Above the Politics for Progress in Science.” The AAAS is the world’s largest general scientific society, with more than 125,000 individual and institutional members, and the publisher of Science magazine. Its mission is “to advance science, engineering, and innovation throughout the world for the benefit of all people.”At this event, there were three “wicked problems” discussed over two days: climate change, global/mobile health, and Lyme disease. This blog, written by Lia Gaertner, will focus only on the Lyme portion of the conference.
Foundation Supports More Researchers Nationwide andExpands Advisory Board to Include Cancer Researcher and Lyme Survivor Neil Spector, MD
Silicon Valley, CA — Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the US, today released its roster of 2015 research grant recipients. Collectively these researchers received $1.5 million from the Foundation for research related to Lyme disease, a growing epidemic with more than 329,000 reported new cases each year according to the CDC. The organization also highlights the exponential increase in donations to the Foundation in 2015, including more than $6 million that will go directly to support research over the next few years, and announced the addition of Duke University cancer researcher/physician and Lyme survivor Neil Spector, MD to its Scientific Advisory Board.
“With so many unanswered scientific questions related to Lyme, it is exciting to be a part of the growing focus on Lyme disease research and increased scientific creativity in approaches to identifying new diagnostics and treatments,” states Linda Giampa, Executive Director.