— 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
“I was driving down a road that I’ve driven 1,000 times and suddenly I had no idea where I was or where I was going. So, I pull over to the side of the road to get myself oriented, and then 5-10 minutes later, I remembered and drove to my destination.”
Several friends affected by Lyme have told me of this same experience. It’s caused by the brain fog symptom of Lyme disease, which is often called “mild cognitive impairment” by physicians. I first learned about brain fog when my friend Laure and I founded the Bay Area Lyme Foundation. She explains it like this:
“My nature is to be prompt, attentive and on top of things. It’s important to me to remember people and conversations, and follow up later. Brain fog makes me feel like my brain is muffled with cotton, and it turns me into a “flake” which is very frustrating and hard for me to accept. There are times my brain has been so confused and my spatial awareness is so poor that I’ve actually walked right into a wall. Often, when I am experiencing brain fog, I have to read paragraphs numerous times, and can’t comprehend the content or remember the beginning of the paragraph by the time I’ve gotten to the end.”
As you can imagine, experiencing brain fog—and the cognitive dysfunction involving memory problems, lack of mental clarity, and poor concentration that comes along with it—is very scary for Lyme patients.
Sunday, August 26th is NATIONAL DOG DAY and in honor of our furry four-legged friends, we wanted to share some tips and tactics for keeping you and your pet safe.
Lyme disease is on the rise — the geographic range and prevalence of Lyme-carrying ticks have expanded significantly in recent years, potentially due to climate change as well as many other factors. Here on the West Coast, temperate conditions mean that Lyme disease is almost a year-round (versus seasonal) threat.
Black-legged ticks prefer shaded, moist ground and leaf litter, but they can also be found clinging to tall grasses, brush, and shrubs. Ticks also inhabit gardens and lawns, particularly at the edge of wooded areas, around stone walls, and anywhere deer and white-footed mice (their most common animal hosts) might travel.
It is almost impossible to completely prevent an outdoor pet (or a human) from any tick encounters, there is simply too much exposure to natural tick habitats just outside our back doors. That being said, there are many simple things you can do to help reduce the risk of Lyme disease for you and your pet. Here we share some tips and some answers to the most commonly asked questions.
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 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 national Lyme Disease Biobank (LDB) launched in Summer 2014 after a successful Fund-A-Need campaign at our annual LymeAid benefit. This initiative, which began with a pilot study in East Hampton, NY, a highly concentrated endemic area for Lyme disease, was designed to help address the shortage of clinical samples to support research into better diagnostics and treatments for Lyme disease. The goal is to create a geographically diverse and robust pool of biological samples (particularly blood, but also tissue and other fluids) characterized with sufficient clinical data and validation information about any co-infections that can then be drawn upon by researchers around the country, allowing for more projects to come to fruition. The biobank has already expanded significantly and released the first samples to researchers last year, supporting a new wave of projects.
Liz Horn, PhD, MBI, a noted expert experienced in building complex biorepositories and other bio-based technological solutions working with a wide array of researchers, institutions, and other agencies, was brought on as the Principal Investigator for the LDB. Dr. Horn has deep expertise in basic science, cancer biology, bioinformatics, registry questionnaire design, and biobank planning and operations.
We talked with Dr. Horn about the progress they have been making at the Lyme Disease Biobank.
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.