Evaluating the Success of Hyperthermia Treatment in Chronic Lyme Disease

— 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.

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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…

In Search of a Cure for Lyme Disease: The Disulfiram Story

– 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.

One Success Hurts Thousands Who Are Suffering

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.

New Study Provides Insight Related to Lyme Brain Fog

– 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.

Call for Entries for the Bay Area Lyme Foundation’s 2019 Emerging Leader Award Grant

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

 

Grants are designed to inspire new research to address the challenges of Lyme disease

PORTOLA VALLEY, Calif., January 15, 2019—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2019 Emerging Leader Awards (ELA), which are designed to encourage promising scientists who embody the future of Lyme disease research leadership in the US. This year, two $100,000 grants will be awarded in May. Recipients will be researchers from academia or the private sector who are currently at the post-doctoral through the assistant professor level or equivalent, and who have demonstrated professional and scientific leadership in the biomedical sciences. They should have a defined approach that offers scientific rationale for a research project that can advance diagnostics or treatments for Lyme disease. Proof of concept for the $100,000 awards should be feasible in 12–18 months.

These awards, along with other Bay Area Lyme Foundation efforts, aim to fill a gap as the National Institutes of Health (NIH) funding for Lyme disease research is insufficient. While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the US, Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.

Bay Area Lyme Foundation Endorses First Recommendations of New HHS Working Group Focused on Tick-Borne Diseases

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

 

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.

Research Supported by Bay Area Lyme Foundation Shows Lower Immune Response Leads To Persistent Lyme Disease Symptoms

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

 

Peer-reviewed Journal Frontiers in Immunology Publishes Important New Research From a Team Led by Bay Area Lyme Foundation’s First Emerging Leader Award Recipient

PORTOLA VALLEY, CA, August, 2018 — Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the US, today announced the publication of new data that offer valuable insights into the role of the immune system in fighting acute Lyme disease.

The data demonstrate a correlation between initial activation of specific components of the immune response, and a patient’s ability to recover following 21 days of doxycycline. Published in Frontiers in Immunology, the research, primarily funded by the Bay Area Lyme Foundation, was led by Lisa K. Blum, Ph.D., a former postdoctoral scholar at the Stanford University School of Medicine. Blum was one of the first recipients of the Bay Area Lyme Foundation Emerging Leader Award, a grant designed to support the research of promising scientists into Lyme disease and the bacteria that causes it, B. burgdorferi. 

“This research addresses one of the ongoing mysteries of Lyme disease, providing important evidence toward understanding why some people get better after a 21-day course of doxycycline, and some remain sick,” said Wendy Adams, research grant director, Bay Area Lyme Foundation. “The insights from this study not only show that both a competent immune response AND antibiotics are necessary to rid the infection, but also point us toward research avenues that could lead to new therapeutics.”

National Dog Day is Sunday August 26th — Keep your Pets Tick and Lyme Safe!

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

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

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

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

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.