Bay Area Lyme Foundation Sees Turning Point for Lyme Disease in 2017
Organization Leaders Honored with HHS Appointment, Jane Seymour’s Open Hearts Award, Among Other Pivotal Events
PORTOLA VALLEY, Calif., December 21, 2017—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced that the organization granted $2 million in 2017 for Lyme research and education, and saw an increase of engagement from scientists, the government and noted celebrities. Studies funded by the foundation and published in 2017 provide significant support to the widely-debated scientific belief that Lyme bacteria persist after standard antibiotic treatment. The foundation continues to demonstrate success in bringing new scientific talent to the fight against tick-borne diseases.
Bay Area Lyme Foundation Now Accepting Applications for $450,000 in Emerging Leader Award Research Grants
‘Emerging Leader Award’ aims to attract new scientific talent to address challenges of Lyme disease
Portola Valley, California, December 5, 2017—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced a call for applications for three Bay Area Lyme Foundation ‘Emerging Leader Award’ grants, one for $250,000 and the other two for $100,000. These awards will be given to promising scientists who embody the future of leadership in Lyme disease research in the US. The award recipients will be researchers in academia or the private sector who have demonstrated professional and scientific leadership in the biomedical sciences and who can offer scientific rationale for a research project that can advance diagnostics or treatments for Lyme disease.
by Wendy Adams, Research Grant Director and Advisory Board Member, Bay Area Lyme Foundation
Recently, we’ve started to hear more about Lyme carditis as one potentially lethal manifestation of Lyme disease. What exactly is it, why does it happen, and how does it cause disease?
What is Lyme Carditis?
First of all, a little Latin. When you see the suffix “-itis”, it denotes inflammation – often caused by an infection. So, carditis literally means inflammation of the heart.
When a Borrelia infection enters the body, we know from animal studies that it disseminates quickly. It tries to find the tissues where it is most comfortable, and often that includes the heart. Borrelia can infect all parts of the heart – the myocardium, the pericardium, and the endocardium, the cardiac muscle, the valves, and even the aorta itself. The immune system senses the presence of the spirochete bacteria and induces inflammation, the first prong of the immune system’s response.
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.
The following is a guest post by one of our esteemed Advisory Board members, Lia Gaertner. Lia is a scientist and also a Lyme patient who has turned her own frustrating experience with the disease into a personal mission to help create greater awareness and understanding about the illness. This year’s explosion in tick counts all over the country necessitates extra vigilance for all of us who enjoy the outdoors. Here, Lia shares some of her family’s precautions.
I am proud to serve as a member of the science team at the Bay Area Lyme Foundation (BAL). As a survivor of two severe Lyme infections on both the East and West coasts of the USA, I know quite a bit about ticks and tick-borne infections. During my twelve-year struggle with Lyme and babesia infections, my physician husband and I had to educate ourselves about ticks and tick-borne infections by going to medical conferences, studying with doctors, reading scientific literature, and mostly by experimenting with dozens of tests and therapies (on me). Now, we both receive daily requests from desperate people who cannot find sufficient information on how to treat their tick bite or tick-borne infections.
Bay Area Lyme Foundation Awards Grants to Researchers Exploring Novel Ways to Detect, Treat Lyme Disease
Massachusetts Institute of Technology and Brandeis University Researchers are the Awardees of the 2017 Emerging Leader Awards
Portola Valley, Calif., July 11, 2017 – Bay Area Lyme Foundation, the leading national nonprofit funder of innovative Lyme disease research, today announced that the winners of its 2017 Emerging Leader Award, are James J. Collins, PhD, Professor, Massachusetts Institute of Technology and Yuko Nakajima, PhD, Postdoctoral Fellow, Brandeis University. Dr. Collins was awarded a $250,000 grant to research an RNA direct detection diagnostic for early Lyme disease, while Dr. Nakajima received a $100,000 grant to investigate potential treatments to block immune evasion by the bacteria causing 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.
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.
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.