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.
It’s All In Your Head. …Or is it? A Physician’s Perspective
Guest post: Dr. Elena Frid, MD
This week, we feature a guest post from Dr. Elena Frid, a board-certified NYC neurologist and specialist in Lyme disease and other vector-borne diseases. Dr. Frid has been recognized by her peers and patients for her innovative diagnostic methods and treatment regiments for a wide array of complex neuro-Lyme manifestations which often mimic other illnesses including multiple sclerosis (MS), Attention Deficit Hyperactivity Disorder (ADHD), various learning disabilities, Autism, Arthritis, Lupus, Alzheimer’s, Dementia, Parkinsons, anxiety/depression, intractable headaches, dizziness, insomnia, obsessive-compulsive disorder (OCD) behavior, ticks and many more. Here, she shares her perspective on the complexities of treating these complex illnesses.
Over the years, I have seen numerous patients who complain of many neurologic and psychiatric conditions. Often, when a patient complains of more than one or two problems, many physicians can get overwhelmed. It is difficult to treat a patient who seems to have a multitude of problems that, at first glance, may not appear to be related. Part of the issue is that medicine is moving in the direction of treating symptoms, and not the underlying cause of the problem.
Sharane Dorrah is on a mission … A passionate hiker, mountain biker, skier, and general outdoors enthusiast who suffered years of debilitating illness due to the unfortunate bite of a Lyme-infected tick, Sharane is determined to ensure that the rest of the world avoid her nightmare through greater awareness and protection.
The company she launched this past year, Peskys, offers fashionable performance activewear instilled with an EPA-approved insect repellent to ward off a wide range of “pesky” bugs that can carry serious diseases. Sharane explains, “Sounds dramatic, I know… [but] I’m on a mission to save lives by giving a fashionable option for protection against bites from those pesky bugs that can carry not only Lyme, but also Zika, West Nile, and all those other ‘bug diseases.’ I’m opening my big mouth and creating awareness. And I’m donating protective clothing and other items to children because they are the most at risk for some of these diseases.”
Sharane’s tactics are intriguing. Certainly the spread and the number of serious diseases like Lyme, Zika, and West Nile have forced the issue into the minds of more people; and yet, apprehension or lack of enthusiasm about the preventive tools available — such as chemical sprays, seemingly excessive coverup or avoidance tactics, etc. — mean that far too many of us who love the outdoors remain at risk. Enter this new concept: “performance apparel reinvented into sophisticated style options that meet the demands of day-to-day urban and outdoor active living. Pesky’s insect repellent apparel options perform equally well on the hiking trail as they do pool-side, at the farmer’s market, or in the backyard. They’ll ward off the worst of the season’s mosquitoes and ticks, but they do it without sacrificing style.”
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.
Lyme disease, if treated early, can usually be successfully eradicated with antibiotics. Unfortunately, as many patients know, if it is not diagnosed early, it can cause debilitating sickness and a myriad of symptoms that are much harder to treat. And not all treatments are covered by insurance, making the whole experience potentially very financially as well as physically draining.
One of the questions we often get is about financial support. Bay Area Lyme Foundation is a research organization, hoping to accelerate the discovery of new, more effective — and less costly! — treatments and diagnostics, but unfortunately is not able to provide support for individual cases. However, there are other places to go for help. There are many organizations doing great work to help support those suffering from Lyme, in fact, a growing number as awareness spreads about this pernicious disease. What follows is a partial list, if you know of others, please do share.
Dr. Chase Beisel is an Assistant Professor at North Carolina State University who was recognized earlier this year with one of Bay Area Lyme Foundation’s prestigious Emerging Leader Awards. This honor is in recognition of and support for his lab‘s novel work exploring CRISPR technology as a potential treatment for Lyme infections.
Dr. Beisel’s work integrates molecular biology, chemical engineering, and mathematical modeling and has been acknowledged with several National Science Foundation (NSF), National Institute for Health (NIH) and other important awards. His foray into the field of Lyme is a new direction for his lab and ties directly to the Foundation’s aim of attracting some of the brightest and best minds in the country to apply innovative new approaches and methodology to accelerate the development of new diagnostics and treatments for Lyme disease. We are excited about his work and asked him to elaborate further in this recent conversation.
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 Lyme Foundation Sponsors Massachusetts General Hospital Forum to Address Challenges of Lyme Disease
Researchers consider issues of persistence, and cardiac and neurological manifestations of Lyme disease, as well as the challenges of other emerging tick-borne diseases
Boston, MA, June 13, 2016 – Massachusetts General Hospital convened a national scientific conference, “Lyme Disease and Tick-Borne Illnesses: Diagnostics, Emerging Pathogens and Avenues for New Research,” was convened at Massachusetts General Hospital to educate and inspirecollaboration toward a greater understanding of the of tick-borne diseases and how research should be focused. This conference, which was attended by academia, industry, and government, was supported by Bay Area Lyme Foundation. Lyme disease infects more than 329,000 people each year in the U.S., and there is currently no sufficiently reliable Lyme diagnostic test and there is no universally effective treatment for post-treatment Lyme disease.