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.
Theresa Wiles is a PSYCH-K® facilitator in Northern California. Her work involves helping patients to leverage their subconscious beliefs for positive outcomes. “Changing our thought patterns changes our ‘Field’ and we begin to create the reality we envision for ourselves. We start to act more intuitively, we experience more serendipity in our lives. The Universe and our subconscious mind starts assisting us in creating the life we envision for ourselves.”
Here, in this guest post, she shares a perspective about how these techniques might assist in the healing of long-term Lyme disease.
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.
The Steven & Alexandra Cohen Foundation Grants $6.5 Million to
Bay Area Lyme Foundation
Gift is part of the largest private donation for Lyme disease research—100% of grant will go directly to Lyme disease research programs.
SILICON VALLEY, California, December 17, 2015 –The Bay Area Lyme Foundation today announced that it received a $6.5 million grant from the Steven & Alexandra Cohen Foundation, the largest private donation ever given to Lyme disease research. The gift will support Bay Area Lyme’s mission of using new scientific research and innovations to make Lyme disease easy to diagnose and simple to cure.
“I was shocked to learn how many people suffer from Lyme disease in silence, and how much we still need to do to raise awareness and help find a cure,” said Alex Cohen, President of the Steven & Alexandra Cohen Foundation. “This gift is incredibly personal to me as I have experienced, first-hand, the chronic and debilitating side effects of this relatively unknown disease. We share Bay Area Lyme Foundation’s desire to find a cure for Lyme disease and hope that this gift will help pave the way to that important work.”
The following is a guest post by a young author and Lyme patient who has turned her experience into a catalyst to help others find their voice and break the silence around long-term struggles with Lyme disease and other chronic illnesses. You can read more about Allie in our Faces of Lyme section and on her own website, sufferingthesilence.com.
Everyone knew about Lyme disease in the town where I grew up. “Easy to diagnose and simple to treat,” people said. “As long as you get the medicine in you, you’ll be fine.” As a kid, I was always hearing stories about someone who had recently been diagnosed with Lyme – parents, cousins, siblings, pets – and in almost every case, the stories I heard were short.