— Guest Post from Michelle McKeon, MS, President, Lyme and Cancer Services
Bay Area Lyme is happy to share the editorial contributions of care providers, patients, caregivers, and others in the community who are eager to share their knowledge for the benefit of others suffering from Lyme and related tick-borne illnesses. There is still so much we don’t know and so much we are just learning. It is critical that we keep an active dialogue and share and collaborate to continue to move our understanding forward. What follows is an article written by a guest contributor and practicing care provider who shares that view and her personal and professional experience in hopes that it can help others with their healing journeys.
Twilight zone: an area just beyond ordinary legal and ethical limits
Living with tick-borne infections is like crossing over into the twilight-zone. Welcome to the dark side! There is suspense. ‘Is a significant amount of the medical community really not going to recognize Lyme as a chronic disease?!’ There is horror. ‘What? The insurance company just denied my treatment because they don’t deem it to be medically necessary?!’ And, of course, there is a psychological thriller. ‘Is this actually my life?!’
When you are at this point of your journey with late-stage Lyme, it seems as though there is no coming back. Where does one go when they are here? Eight years ago, I asked myself this very question. At this time, hyperthermia treatment was presented as my best option. While already feeling like I was living in an alternate universe, the idea of heating up my body to above 105° F was not exactly the escape plan that I had dreamed of. This led me to my next question…
– Bonnie Crater, founder and vice-chair of the Board of Directors, Bay Area Lyme Foundation
What does an anti-alcoholism drug have to do with Lyme disease? Nothing—until a 2016 study funded by Bay Area Lyme Foundation found a link. From around 2014 through 2017, two labs on opposite coasts—one at Johns Hopkins University and one at Stanford—were testing thousands of FDA-approved drugs to identify an existing drug that worked against “persister” forms of Borrelia burgdorferi (Bb), the bacteria that causes Lyme disease(1,2,3,4). Why were they doing this?
Here’s a little background. Borrelia burgdorferi, a spirochete, when cultured in a lab has roughly 3 different forms: a) a culture with predominantly long or corkscrew forms, b) a culture with predominantly round forms and some microcolonies, and c) a culture with predominantly microcolonies (2). Most laboratory studies regarding the effectiveness of antibiotics are conducted in cultures on long forms. In this long form, the spirochete is motile and can divide (although very slowly) and consequently, some antibiotics work much better on the long form. However, after exposure to antibiotics such as doxycycline, the spirochete curls up into a round form and some clump together with other spirochetes to form a few microcolonies. These round-body and microcolony forms are understood to be a defensive posture for the bacteria.
by Daniel Lynch, Founder & President, Medical Bill Gurus
This week, we have a guest post from Daniel Lynch. Daniel Lynch is the founder of Medical Bill Gurus, a patient and physician advocacy company that specializes in navigating the complex issues associated with healthcare and medical bills. His mission, he explains is to “utilize our wealth of information to ‘pay it forward’ to those who need assistance! … Although most claims for Lyme disease are typically at cash-only medical providers and not covered by insurance companies, we at Medical Bill Gurus have put together a process of breaking down bills, and identifying components of treatment that are covered by PPO insurance plans.”
Here he shares his perspective and some tips. Bay Area Lyme Foundation has no connection with Medical Bill Gurus and this post is not an endorsement of their services. At Bay Area Lyme, we are committed to supporting the community by ensuring access to information and resources to help them deal with Lyme disease.
By Jo Ellis, Education Outreach, Bay Area Lyme Foundation
Bay Area Lyme at 2017 Association of Environmental and Outdoor Educators Annual Conference in La Honda, CA
Spreading awareness about Lyme and tick-borne infections among high-risk groups has been a key objective for our growing education outreach program at Bay Area Lyme Foundation and the Association for Environmental and Outdoor Educators (AEOE) has been part of our overall education outreach strategy. For the last three years, Bay Area Lyme has attended AEOE’s annual spring conference, raising awareness about Lyme and teaching professional naturalists, outdoor educators, and science teachers how to protect both themselves and the children they serve against Lyme and other tick-borne diseases.
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.
Bay Area Lyme Foundation Highlights Growth of Scientific Lyme Community in 2016
Foundation demonstrates recruitment of new scientific talent through innovative programs
SILICON VALLEY, Calif., November 28, 2016—Bay Area Lyme Foundation, a leading public nonprofit funder of Lyme disease research in the US, today announced that the organization granted $1.75 million in 2016 for Lyme research and education. Over the year, the Foundation continued to demonstrate success in bringing new scientific talent to the fight against tick-borne diseases. The organization highlights the recipients of the 2016 grant cycle, outlines the benefits of the Foundation’s contributions to Lyme Innovation, and announces their national Lyme Disease Biobank.
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.
On March 2nd, Bay Area Lyme again hosted another of its Speaker Series events. These popular salon-style events allow community members to come together in an intimate forum to share stories and hear directly from experts in the field.
Free Tick Testing Initiative Is First In The Nation and Aims to Map Tick-borne Diseases Across the U.S. Through Crowd-sourcing
Silicon Valley, CA, February 16, 2016 — Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the US, today announced that the Foundation is the first to offer free tick testing for residents of the U.S. Testing is available through a partnership with Nate Nieto, PhD, Assistant Professor, Department of Biological Sciences, Northern Arizona University and his lab. Bay Area Lyme Foundation hopes to use this crowd-sourced data as a vehicle for gaining a greater understanding of the geography of tick-borne diseases in the U.S. If successful in accumulating data, it will be the first crowd-sourced study of its kind.