— 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…
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.
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.
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.
Lyme Disease Biobank Expands to Increase Understanding of Lyme Disease in Heart, Brain, Joints and Other Tissues
First-of-its-kind Biobank now accepts tissue donations from patients undergoing knee-replacements and similar surgeries, as well as patients who die with Lyme disease
Portola Valley, Calif., November 1, 2018 – Bay Area Lyme Foundation, a national organization funding research to make Lyme disease easy to diagnose and simple to cure, announces the addition of the Lyme Disease Tissue Collection Program to its Lyme Disease Biobank, which currently accepts blood samples. The expansion of the Biobank will allow for a greater understanding of the ability of Lyme bacteria to invade tissues and organs. The Lyme Disease Biobank is the only national entity working to accelerate research by collecting surgical and post-mortem tissue samples from individuals with persistent Lyme disease and other tick-borne infections.
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.