— 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…
Journal of Clinical Microbiology Publishes First Study Using Samples from the Lyme Disease Biobank
More Than 40 Research Projects Have Now Used Samples from Bay Area Lyme Foundation’s Lyme Disease Biobank
PORTOLA VALLEY, Calif., Oct. 15, 2019 /PRNewswire/—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced that a study published in the Journal of Clinical Microbiology reports a potential new diagnostic, mChip-Ld, which can be performed in 15 minutes in a physician’s office, offers efficacy improvement over the current gold standard diagnostic, the two-tier test, and may be able to identify a patient’s Lyme disease stage. The research study, which was funded by the National Institutes of Health, was made possible, in part, by blood samples provided by Bay Area Lyme Foundation’s Lyme Disease Biobank (LDB). LDB is a program of Bay Area Lyme Foundation (BAL), and is supported by donations from multiple sources including the Steven & Alexandra Cohen Foundation.
“Our research toward developing rapid diagnostic assays for Lyme disease is impossible to carry out without having access to laboratory confirmed physician-characterized blood samples,” said study author Maria Gomes-Solecki, DVM, associate professor at The University of Tennessee Health Science Center. “In the past, a limited set of well-characterized Lyme disease samples could be obtained from the CDC. The BAL Lyme Disease Biobank provides another much-needed option in that regard.”
First West Coast CME Program on Tick-borne Disease Provides New Data, Insights from Researchers
Stanford University School of Medicine and Massachusetts General Hospital host clinical and research forum funded by Bay Area Lyme Foundation
Silicon Valley, CA, September 3, 2019—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today highlights the first tick-borne disease CME program on the West Coast, Emerging Research, Diagnosis and Treatment of Lyme Disease and Tick-Borne Illness. The conference was hosted by two major academic institutions representing the East and West Coasts of the U.S., Stanford University School of Medicine and Massachusetts General Hospital, and included presentations related to the magnitude of tick-borne disease in California, emerging diagnostic technologies, potential future treatment options, and epidemiological statistics enabled by Lyme disease biobanks.
“There is a lack of understanding about the variety and severity of tick-borne illnesses such as Lyme disease on the west coast” said Charles Chiu, MD, PhD, professor of laboratory medicine and infectious diseases at UCSF, associate director of the UCSF Clinical Microbiology Laboratory, and Bay Area Lyme Foundation Scientific Advisory Board member. “This was a great opportunity to share the latest findings and ongoing research on the topic, so that physicians and other medical professionals can more quickly and accurately diagnose and treat their patients.”
– 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.
Bay Area Lyme Foundation Tick Testing Program Adds Bartonella Pathogen Assay
Nationwide Free Tick Testing Initiative Will Inform Citizen-Science Studies to Better Understand the Spread of Ticks Carrying Diseases Throughout U.S.
Silicon Valley, CA, July 11, 2019 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the relaunch of its nationwide free tick testing program, which will include an assay for Bartonella, a disease-causing pathogen carried by ticks. Based on the success of the Free Tick Testing Citizen Science program, Bay Area Lyme Foundation has significantly increased funding for the 2019 nationwide collection effort, adding an automated submission process and increased research support. Researchers anticipate this citizen- science program will enable the organization to unearth further discoveries.
Results of the first citizen-scientist study were published in the peer-review journals PLOS ONE in 2018, and International Journal of Health Geographics in 2019. The study, which evaluated the prevalence of disease-carrying ticks throughout the United States, and included a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico, led to the discovery of ticks capable of carrying Lyme and other tick-borne diseases in 83 counties, in 24 states, where these ticks had not been previously recorded. The program received a six-fold increase in tick submissions over initial estimates, representing unprecedented national coordination of a ‘citizen science’ effort and diagnostic investigation.
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.
If your trail is overgrown and thick with tall grasses (and most are thanks to a very wet Spring this year) … then you need to be aware of TICK HITCHHIKERS…
Unlike their highway counterpart these tick free riders don’t ask, they just grab on as you, your pet (or your horse) pass by. They perch quietly on the grasses and weeds that line your trail or backyard patiently waiting for their next unsuspecting host (and likely meal).
All too easily, you end up taking home a few uninvited guests and if not careful about checking and removing these pests when you return home, you could also end up inviting possible infection into your home.
Ticks carry Lyme disease and many other related infections that can cause debilitating and lasting symptoms. Tick incidence is on the rise almost everywhere, in part due to climate change and wetter, milder winters. If you enjoy the outdoors, you need to be aware of these itinerant nuisances and you need to take precautions to stay safe…
Bay Area Lyme Foundation’s LymeAid, Led by Jeff Bridges, Celebrates Progress, Awards New Grants
Research update and promising grant recipients energized the jubilant crowd
PORTOLA VALLEY, Calif., May 14, 2019—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, brought together scientists, philanthropists, celebrities and patients at the top of the Salesforce Tower in San Francisco for the seventh annual LymeAid, an event aimed at raising funds to make Lyme disease easy to diagnose and simple to cure. The event was the largest non-profit fundraising event held on the 61st floor of the Tower, and $1M was raised, of which 100 percent will go directly to fund scientific research, education and prevention programs for Lyme disease.
“It takes a community to solve a problem as big as Lyme, and it is wonderful to see such a powerful community here tonight to support Lyme research and the work of Bay Area Lyme Foundation,” said Jeff Bridges, actor, singer, producer and composer. Bridges entertained at LymeAid, and paid tribute to his friend Kris Kristofferson who was misdiagnosed several times before receiving an accurate diagnosis of Lyme disease, and is now on the road to recovery.
Written by Julia Ries for Healthline on April 4, 2019; Reprinted with permission.
Although spring has just begun, tick season is already well underway. The slew of wet weather seen across the country has ticks crawling out and about earlier than usual. Seeing as most ticks thrive in warm, moist weather, tick season will likely be especially tough this year, health officials predict.
“While regions across the country were either unseasonably cold or warm this past winter, there’s one factor that almost all of them had in common: excessive moisture,” Jim Fredericks, PhD, the chief entomologist for the National Pest Management Association (NPMA), said in the NPMA’s bi-annual Bug Barometer press release.
“From record-setting snow in parts of Texas and Arizona to excessive rain in the southeast, continued precipitation predicted for most of the country this upcoming season will allow pest populations to continue to thrive and multiply,” he said.
– 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.