Making a Contribution and Feeling Heard—One Lyme Patient’s Experience of Participating in the Lyme Disease Biobank

Lyme Disease Biobank Collection
By Bay Area Lyme Foundation

BAL Spotlights Series

 

In June of this year, Lyme Disease Biobank (LDB), led by Principal Investigator Liz Horn, PhD, MBI, conducted sample collection days at our partner site, Gordon Medical Associates, in San Rafael, CA. During the two-day event, we took the opportunity to sit down and talk with participants, hear their Lyme disease stories, and learn what motivated them to donate blood and urine samples to LDB.

Sarah Reid’s Lyme story is not dissimilar to the stories of many Lyme patients in California. She never saw a tick; she never had a rash; and for a very long time—despite countless doctors’ appointments, interventions, tests, and hours of research—she had absolutely no diagnosis for her bewildering kaleidoscope of symptoms. When she finally received confirmation from lab tests ordered by Gordon Medical Associates that she indeed had Lyme and Bartonella, the news was a massive relief initially. She finally had answers. However, as the diagnosis sunk in, it sparked reflection on her lifelong health struggles and launched her into a new world of confusion, frustration, and decision-making as she learned to navigate and manage her Lyme.

Laure Woods: Empowering Women in Science

By Bay Area Lyme Foundation

Laure Woods (Photo – Drew Altizer Photography)

“Empowering Women in Science” featuring Laure Woods, Class of ’80

from the Santa Catalina Spring/Summer Bulletin 2020

After obtaining a B.S. in Animal Science from UC Davis, Laure Woods ’80 went on to a career in clinical research, working with pharmaceutical companies such as Matrix Pharmaceutical and Genelabs Technologies. She also founded her own consulting business to advise companies that test the safety and efficacy of medications, devices, diagnostic products, and treatment regimens intended for human use. Laure also formed a private foundation focused on the education, health, and welfare of children, and founded the LaureL STEM Fund, which led to her work with Santa Catalina’s robotics team.

HOW DID YOU HELP START THE PROJECT AT SANTA CATALINA? In 2017, I contacted the school with my desire to help fund an all-girls robotics team. This decision was driven by my experience at the FIRST Robotics competitions I attended with my daughter’s team. There were more boys than girls and one or no all-girls teams at the competitions. So of course I contacted my alma mater! I was so excited to learn that a group of students, led by Madison Gong ’18, had already formed a team and were using a room for their robotics lab in the Sister Claire and Sister Christine Mathematics and Science Center. I had recently started the LaureL STEM Fund as part of my family foundation, and one of our goals is to create more opportunities for young women in STEM. We were excited to partner with the Catalina robotics team—entirely driven by students.

Inadequacy in the medical field to accurately diagnose a Lyme rash

By Bay Area Lyme Foundation

– Wendy Adams, Research Grant Director, Bay Area Lyme Foundation

Erythema migrans (EM) is the hallmark sign of infection with B. burgdorferi. An EM is defined as an expanding annular (round) lesion or rash of at least 10cm (2.5in). Most rashes occur 3–30 days after infection, however there are case reports that show EMs can appear sooner than three days post infection.

The term “Bulls-eye” rash is often used synonymously with EM. But an EM is not required to have central clearing or a target appearance. The rash can take many forms, and may have a raised bump in the middle, can be itchy or warm, and can have a bluish cast like a bruise. It can be round or even oval. Only 20% of Lyme disease with an EM have the bulls-eye presentation. That means that only 1 in 6 total Lyme cases will have a rash with a target appearance.

The rash also may not be present at all. While the Centers for Disease Control and Prevention report that 70-80% of patients may exhibit the erythema migrans, this number can vary by study. For example, a 2010 study showed that in the state of Maine only 43% of Lyme patients exhibited this rash when infected with Lyme.

Seven Herbal Medicines Are Capable of Killing Lyme Disease Bacteria, According to New Lab Study

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

Seven Herbal Medicines Are Capable of Killing Lyme Disease Bacteria, According to New Lab Study

Research Supported by Bay Area Lyme Foundation Evaluates Anti-microbial Effects of 14 Natural Products Compared to Antibiotics Used to Treat Lyme Disease

Marin, CA, February 21, 2020—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced the publication of new data finding that seven herbal medicines are highly active in test tubes against B. burgdorferi, the bacteria that causes Lyme disease, compared to the control antibiotics, doxycycline and cefuroxime. Published in the journal Frontiers in Medicine, the laboratory study was funded by the Bay Area Lyme Foundation and supported in part by The Steven & Alexandra Cohen Foundation. The study was a collaboration between researchers at Johns Hopkins Bloomberg School of Public Health and colleagues at the California Center for Functional Medicine and FOCUS Health Group, Naturopathic.

“Since traditional antibiotic approaches fail to resolve symptoms in up to 25% of patients treated for Lyme disease and many suffer disabling effects of the disease, there is a need for novel treatment proven effective against B. burgdorferi,” said the paper’s co-author Sunjya K. Schweig, MD, CEO and co-director, California Center for Functional Medicine and Scientific Advisory Board Member, Bay Area Lyme Foundation. “Because patients are currently turning to herbal remedies to fill the treatment gaps left by antibiotics, this research is a critical step in helping clinicians, as well as patients, understand which ones may offer the most potential benefit.”

Evaluating the Success of Hyperthermia Treatment in Chronic Lyme Disease

By Bay Area Lyme

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.

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

By Bay Area Lyme Foundation

– 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

By Bay Area Lyme Foundation

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

By Bay Area Lyme Foundation

– 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.

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

By Bay Area Lyme Foundation

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.”

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

By Bay Area Lyme Foundation

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.