— 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…
Bay Area Lyme Foundation Responds to NY Times Story
We are thrilled for the Mandavilli family, who shared that their son responded well to treatment for Lyme disease in The New York Times story My Son Got Lyme Disease. He’s Totally Fine. This is not the case for everyone, and it is irresponsible, and scientifically inaccurate, to blanketly define Lyme, and other tick-borne diseases, as “easily treated”. This one patient’s experience can be countered by hundreds of other patients whose disease has brought their lives to a halt. It does a huge disservice to patients whose families read stories like this and question the patient’s symptoms, and whose community doctors see reports like this and refuse much-needed treatment. The joy of the Mandavilli family should be heralded as a success but not an example.
The CDC has reported deaths due to Lyme disease beginning as early as 2013, with most caused by Lyme carditis, a condition in which the bacteria invades the heart.And, the ability of this bacteria to invade other organs, including the brain, and cause paralysis is well-documented. Several celebrities including Alec Baldwin, Avril Lavigne, Yolanda Hadid and Kelly Osborne have by their own accounts believed that they were near death due to Lyme disease. Clearly, the singular experience of the Mandavilli family is not broadly representative of what every person with Lyme experiences.
Grants are designed to inspire new research to address the challenges of Lyme disease
PORTOLA VALLEY, Calif., January 15, 2019—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2019 Emerging Leader Awards (ELA), which are designed to encourage promising scientists who embody the future of Lyme disease research leadership in the US. This year, two $100,000 grants will be awarded in May. Recipients will be researchers from academia or the private sector who are currently at the post-doctoral through the assistant professor level or equivalent, and who have demonstrated professional and scientific leadership in the biomedical sciences. They should have a defined approach that offers scientific rationale for a research project that can advance diagnostics or treatments for Lyme disease. Proof of concept for the $100,000 awards should be feasible in 12–18 months.
These awards, along with other Bay Area Lyme Foundation efforts, aim to fill a gap as the National Institutes of Health (NIH) funding for Lyme disease research is insufficient. While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the US, Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.
The Foundation encourages Congress to support the recommendations to fund efforts to increase scientific understanding of Lyme disease and other tick-borne infections
Portola Valley, Calif., November 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, offered their appreciation to the U.S. Department of Health and Human Services (HHS) in response to The Tick-Borne Disease Working Group’s recommendation for increased Federal investment focused on Lyme disease awareness, education, diagnosis and treatment. This Federal Advisory Committee was enshrined in the 21st Century Cures Act, after years of work by Lyme disease advocates and their congressional representatives to review the Federal Government’s activities on tick-borne disease.
“This document represents an important first step by the U.S. federal government to recognize the need to better address tick-borne diseases,” said Wendy Adams, Research Grant Director, Bay Area Lyme Foundation and Member, Tick-Borne Disease Working Group. “These recommendations make the powerful point that significant increases in federal government funding for tick-borne disease research are required before we can truly diagnose and treat tick-borne infections.”
While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the U.S., Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.
George Church, Ph.D., Ting Wu, Ph.D., Steven E. Phillips, M.D. and Michal Caspi Tal, Ph.D., Named Recipients of Bay Area Lyme Foundation’s 2018 Emerging Leader Award
– Genomics, immunotherapy and unraveling the stealth attributes of Lyme disease are the focus of the 2018 Emerging Leader Award projects, designed to inspire new Lyme disease research –
PORTOLA VALLEY, Calif., May 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., announces the recipients of the 2018 Emerging Leader Awards, which are designed to encourage promising scientists who embody the future of Lyme disease-research leadership.George Church, Ph.D. and Ting Wu, Ph.D. will each be awarded a $250,000 grant to launch the Genomic Lyme Disease Research Initiative project at Harvard Medical School, and Michal Caspi Tal, Ph.D. and Steven E. Phillips, M.D. will each receive $100,000 toward therapeutic research related to immunotherapy and an innovative new drug aimed at eliminating chronic tick-borne infections, respectively. Lyme disease is a potentially devastating infection impacting more than 300,000 Americans each year.
New Study Finds Lyme Bacteria Survive a 28-day Course of Antibiotics When Treated Four Months After Infection by Tick Bite
All subjects treated with antibiotics were found to have some level of infection 7–12 months post treatment.Despite testing negative by antibody tests for Lyme disease, two of 10 subjects were still infected with Lyme bacteria in heart and bladder. Lyme bacteria which persist are still viable.
Portola Valley, California, Dec. 13, 2017—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of two papers published in the peer-reviewed journals PLOS ONE and American Journal of Pathology, that seem to support claims of lingering symptoms reported by many patients who have already received antibiotic treatment for the disease.
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.
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.
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.