tick-borne illness Archives - Bay Area Lyme Foundation

Bay Area Lyme Foundation Celebrates Department of Defense CDMRP Tick-borne Disease Awardees

By Bay Area Lyme Foundation

Bay Area Lyme Foundation Celebrates Department of Defense CDMRP Tick-borne Disease Awardees

Projects of three awardees to be enabled by Lyme Disease Biobank samples

PORTOLA VALLEY, Calif., March 23, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces that two projects it has previously funded have now received Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Tick-Borne Disease awards. Three of the six recently announced CDMRP awardees will be using biological samples from Bay Area Lyme Foundation’s Lyme Disease Biobank to enable their research into diagnostics and therapeutics for tick-borne diseases, including Lyme disease—which infects half a million people each year.

“Government awards like CDMRP help propel much needed research on tick-borne illnesses forward, and, with three diagnostics projects using Biobank samples, we are honored to play a part in making this important research possible,” said Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, which provides researchers with access to reliable biological samples to enable research toward better diagnostics and treatments for these complex diseases. “If researchers don’t have access to well-characterized blood samples with robust testing and medical information, they can’t build the necessary research programs to develop better diagnostics, which are urgently needed for these complex diseases,” added Dr. Horn.

ALL ABOUT KIDS WITH LYME, PANS, MOLD ILLNESS

By Bay Area Lyme Foundation

BAL Spotlights Series

In this conversation between Ticktective™ host Dana Parish and Harvard-trained pediatrician Charlotte Mao, MD, the discussion focuses on how Dr. Mao gradually moved away from the narrow view of Lyme disease and began to champion understanding and therapeutics for children suffering from persistent Lyme. They explore tick-borne diseases and their connection to other chronic illnesses that are often misunderstood and misdiagnosed by conventional medicine. Note: This transcribed podcast has been edited for clarity.

Dana Parish: Welcome to the Ticktective Podcast, a program of the Bay Area Lyme Foundation, where our mission is to make Lyme disease easy to diagnose, and simple to cure. I’m your guest host today, Dana Parish. I’m the co-author of the book Chronic, and I’m on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with clinicians, scientists, patients, and other interesting people. We’re a non-profit foundation based in Silicon Valley, and thanks to a generous grant that covers a hundred percent of our overhead, all of your donations go directly to our research and our prevention programs. For more information about Lyme disease, please visit us at bayarealyme.org.

Dana Parish: Hi I’m so excited to guest host the Ticktective podcast today. I want to introduce you to a very dear friend of mine, one of the most brilliant, curious, interesting, funny, and dearest people. Please welcome Dr. Charlotte Mao. She is a pediatric infectious diseases physician with a special focus on Lyme disease and associated infections. She received her medical degree at Harvard Medical School and did her pediatric and infectious diseases training at Boston Children’s Hospital. The first 25 years of her career were focused primarily on pediatric HIV clinical care and clinical research, serving as a site co-investigator for numerous NIH funded multi-center pediatric HIV clinical trials at Boston Children’s Hospital. She turned her focus to Lyme and associated diseases after gaining extensive clinical experience with pediatric Lyme patients in Boston children’s hospital’s referring ID clinic. Then she joined the Pediatric Infectious Disease Department at Mass General Hospital and Spaulding Rehab Hospital Dean Center for Tick-borne Illness, where she was the pediatric IG specialist in a multidisciplinary clinic for children with complex Lyme disease. She is currently curriculum director for Invisible International. She most recently served on a tick-borne disease working group subcommittee for prevention and treatment and co-organized a Cold Spring Harbor Laboratory Banbury Conference on perinatal transmission of Lyme Disease. She’s also on the Bay Area Lyme Foundation’s Science Committee. Welcome, Charlotte. It’s so great to see you!

One Lyme Patient’s Challenging Quest to Donate Her Body to Science in Her Final Days

By Bay Area Lyme Foundation

BAL Spotlight Series

In Puerto Rico, Donating Your Body to Science is Almost Impossible

Luisette Mauras Rodriguez working in the lab at Cornell — Working in the lab at Cornell in 1997

Luisette Mauras Rodriguez is lying in bed at home in Guyana, Puerto Rico, waiting to die. She’s 46 years old, her body ravaged by Lyme, numerous tick-borne coinfections, and a multitude of other hits caused by environmental exposure to toxins like black mold, fungus, mycoplasma, and chikungunya virus. Family members do not understand her illness and laugh at her ‘exaggerations.’ Her husband left her because he fears getting sick and his religious convictions cause him to question the validity of her condition. Her mother, formerly a registered nurse, has abandoned her to her fate. Whenever Luisette gets desperate for help and goes to the ER, they refer her to the psych ward saying her illness is fabricated.

Cornell University and the surrounding woods where she was bitten

A former professional lab technician who worked in pharmaceutical development with US companies like Wyeth, SmithKline Beecham, and IPR Pharmaceuticals, Luisette has one dying wish: to donate her body to the Lyme Disease Biobank (LDB) so that samples from her brain, joints, organs, and tissues will be used to fuel much-needed research into Lyme and tick-borne diseases. She has registered with the National Disease Research Interchange (NDRI) in Philadelphia to have her body collected after her death, but as of writing this article, staff there are unable to find any medical professional on the island willing to partner with them to ensure this happens.

“We have been unsuccessful in securing anyone for recovery for the donor located in Puerto Rico. It has been very difficult getting anyone to follow up with us on top of the language barrier. We were trying to give the pathology department at the University time to get back to us but they seem to be very busy. The complexity of the recovery also makes it more difficult as well.” — Wauchita Green, Manager, Organ & Tissue Source Sites, NDRI, The National Disease Research Interchange

From Long Covid to Long Lyme: Persistent Infections Drive Chronic Illness

Ticktective interview with Dana Parish and Amy Proal, PhD

By Bay Area Lyme Foundation

BAL Spotlights Series

In this insightful conversation between Ticktective™ guest host Dana Parish and microbiologist Amy Proal, PhD, we investigate persistent pathogens, how they remain in the body after treatment often leading to chronic illness, and how they can be reactivated by new infections, including Covid-19. Note: This transcribed podcast has been edited for clarity.

Dana Parish: Welcome to the Ticktective Podcast, a program of the Bay Area Lyme Foundation, where our mission is to make Lyme disease easy to diagnose and simple to cure. I’m your guest host today, Dana Parish. I’m the co-author of the book Chronic, and I’m on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with clinicians, scientists, patients, and other interesting people. We’re a nonprofit foundation based in Silicon Valley, and thanks to a generous grant that covers a hundred percent of our overhead, all your donations go directly to our research and our prevention programs. For more information about Lyme disease, please visit us at www.bayarealyme.org.

Today, on behalf of Bay Area Lyme Foundation, I am here with brilliant microbiologist Dr. Amy Proal. I have a little bio for her. I’m going to read right now. Dr. Proal serves as president and CEO of PolyBio Research Foundation, and she’s the chief scientific officer of the Long Covid Research Initiative, LCRI. She went to Georgetown, she has a PhD in microbiology from Murdoch University in Australia, and she is a rockstar in the field and a leader in the field of persistent pathogens. She has just come off of a huge press tour for her incredible work and the enormous grant that she just received for her Long Covid research, and I’m so excited to be one of the first people to talk to you after all this.

Amy Proal, PhD: Of course, Dana, thanks so much for having me. That was an amazing intro. I appreciate all of that. It’s great to be interviewed by you. It’s mostly just a friendly conversation, which is fun.

Dana Parish: So, congratulations on your grant. I found out about it all coming together because I saw it in Forbes and then in the LA Times, and then I saw it in the Financial Times and I was like, “Oh my God. This is front page news!” Can you talk a little bit about the work you’re doing in Long Covid?

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

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.

Bay Area Lyme Partners with Junior Golf Associations to Educate Thousands of Young Golfers about Tick Bite Prevention

Golfers are at high risk for Lyme disease

By Bay Area Lyme Foundation

BAL Happenings Series

Promoting tick bite prevention and educating everyone about the serious health impacts of tick-borne diseases has been a consistent objective for Bay Area Lyme Foundation. After all, although the foundation’s mission is to make Lyme disease easy to diagnose and simply to cure, it would be so much better if nobody ever got bitten by an infected tick in the first place. But as ticks continue to proliferate and the number of people impacted by Lyme and tick-borne diseases grows, the need for tick bite prevention and education escalates accordingly. That’s why the foundation is excited about its three-year partnership with the American Junior Golf Association (AJGA), and an upcoming announcement with PGAJR, as they provide an unprecedented opportunity to reach thousands of young athletes and their families.

But why are golf courses high risk locations for tick bites? After all, the fairways are mown regularly, and golfers are typically walking around on grass that is short and frequently tended. Surely hiking, mountain biking and running in areas where trails are overgrown and you’re outside at times when infected ticks are most active would be higher risk?

What To Do If You Find a Tick

By Bay Area Lyme Foundation

Dan Wolff, aka "Tick Man Dan"

Dan Wolff “Tick Man Dan”, the founder and president of TickEase tweezers, the only patented, CDC-compliant, two-sided tweezer created expressly for removal of embedded ticks from people and pets.. He discusses his invention, what to do when you find a tick, ecology of ticks, and how Tony Fauci ended up at his bar mitzvah. Ticktective Video and Podcast Editor: Kiva Schweig.

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Citizen Scientist Study Fuels Launch of First Series of Interactive U.S. County Maps of Ticks Carrying Diseases

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Citizen Scientist Study Fuels Launch of First Series of Interactive U.S. County Maps of Ticks Carrying Diseases

– Study finds ticks carrying disease-causing bacteria in 116 counties where they have not been previously documented by CDC –

PORTOLA VALLEY, CA, October 20, 2021—Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the U.S., today announced the launch of interactive national tick maps of U.S. counties based on data published in mSphere, a multidisciplinary open-access journal of the American Society for Microbiology. The new data identify Ixodes ticks carrying disease-causing pathogens in 116 counties which were not previously identified by the Centers for Disease Control (CDC).

“The area known to harbor disease-carrying ticks continues to expand, and we hope people across the US will use these interactive maps to learn more about the risks for their hometowns, their family’s residences and vacation spots,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “The citizen scientists contributing to this study allowed the country’s collective tick knowledge to advance further than even the CDC could do at this time. Gaining the support of citizen scientists allowed us to collect from many counties across the country where ticks are not usually collected and tested, or they are not tested for these pathogens.”

Tick-borne Diseases, PANS/PANDAS and Resulting Pediatric Anxiety and Eating Disorders

By Bay Area Lyme Foundation

Daniel Kinderlehrer, MD

Daniel Kinderlehrer, MD is the author of Recovery from Lyme Disease: The Integrative Medicine Guide to the Diagnosis and Treatment of Tick-Borne Illness. He is also the author of several review articles in medical journals and the Lyme Times. Dr. Kinderlehrer attended Tufts Medical School and is an internal medicine physician. He co-founded the New England Center for Holistic Medicine and has a private integrative medicine practice in Denver, Colorado, where he treats patients with tick-borne illnesses. Ticktective Video and Podcast Editor: Kiva Schweig.

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Gratitude of a Celebrity, Business Woman, Author, Wife and Mom

By Bay Area Lyme Foundation

Ally Hilfiger

Ally Hilfiger, film producer, fashion designer, businesswoman, reality TV star, daughter of fashion mogul Tommy Hilfiger, Lyme advocate, and author of the book “Bite Me” shares her personal experience with tick-borne diseases and her path to healing. Ticktective Video and Podcast Editor: Kiva Schweig.

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