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.

***********************

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

FOR IMMEDIATE RELEASE

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

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.”

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.

Bay Area Lyme Foundation’s LymeAid, Led by Jeff Bridges, Celebrates Progress, Awards New Grants

FOR IMMEDIATE RELEASE

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

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.

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.

Lyme Disease Biobank Expands to Increase Understanding of Lyme Disease in Heart, Brain, Joints and Other Tissues

FOR IMMEDIATE RELEASE

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

 

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.

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.

Citizen-Scientist Study is First to Find Ticks Capable of Carrying Lyme Disease in 83 U.S. Counties Where Previously Undetected

FOR IMMEDIATE RELEASE

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

Citizen-Scientist Study is First to Find Ticks Capable of Carrying Lyme Disease in 83 U.S. Counties Where Previously Undetected

Study Validates Citizen Participation as Viable Method for Health Agencies to Evaluate Tick-borne Disease Risk

PORTOLA VALLEY, CA, July 12, 2018 — Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the U.S., today announced the results of the first citizen-scientist study to evaluate the prevalence of disease-carrying ticks throughout the United States. Conducted through a partnership with Northern Arizona University and Colorado State University and published in the peer-review journal PLOS ONE, the study is based on a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico. The study found 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.

“Identifying geographic patterns of tick-human contact provides valuable insight that may help public health officials, patients and physicians become more vigilant about Lyme disease, increasing early diagnosis,” stated Linda Giampa, executive director at Bay Area Lyme Foundation. “Based on these findings, it is critical that residents throughout the country take precautions and know the symptoms of tick-borne infections, even in areas where ticks have not previously been shown to cause disease.”