post treatment lyme disease Archives - Bay Area Lyme Foundation

The Long and Winding Road: The Story of Bay Area Lyme’s Multi-Year Quest to Identify Treatments for Lyme Patients

By Bay Area Lyme Foundation

BAL Leading the Way Series

“The opening of a network of Lyme disease clinics is the culmination of many years of tireless work and the vision of a small group of determined women over 10 years ago. We are extremely optimistic that the Lyme Clinical Trials Network will accelerate the development of new treatments for patients with post-treatment and persistent Lyme disease.”

—Linda Giampa, Executive Director, Bay Area Lyme Foundation

When Bay Area Lyme Foundation (BAL) was formed a decade ago, its mission was clear: to make Lyme disease easy to diagnose and simple to cure. “And that’s still our goal,” emphasizes BAL co-founder Bonnie Crater, as she reflects on the last 10 years. However, appreciating the magnitude of the Foundation’s audacious mission requires an understanding of two complex—yet inextricably linked—medical domains: the world of diagnostics, and the world of therapeutics.

Bay Area Lyme Co-Founder Bonnie Crater

The ‘Holy Grail’ for Lyme disease is an accurate diagnostic test—or better yet a suite of specifically designed tests for the different stages of acute and persistent Lyme disease. Although great strides are being made in understanding the infection and the disease’s progression, the ‘silver bullet’ of accurate diagnostic tests continues to elude us. The current diagnostics for acute Lyme (a two-step process with an ELISA either followed by a Western blot or another ELISA) are fraught with problems. These tests may miss up to 70% of acute Lyme cases or deliver false negative results. They are unreliable for detecting acute Lyme and are ineffective indicators for anyone with a persistent/chronic tick-borne infection. (Watch or listen to our Ticktective with Brandon Jutras, PhD, to learn why the current direct detection tests for Lyme are so inaccurate.)

Add to this the fact that FDA-approved therapeutics—or ‘cures’—have not evolved much in 10 years either and foment controversy. A quick internet search on ‘How to treat Lyme disease’ will offer information from the IDSA (Infectious Diseases Society of America) stating that a 10-14-day course of oral antibiotics, such as amoxicillin or doxycycline, will do the job for someone with an EM (Erythema migrans) rash who has early/acute Lyme. But anyone who has had Lyme disease, been treated, and then experienced a continuation of symptoms knows that this recommended course of intervention often fails to clear the infection, leaving some persistent Lyme patients in limbo, and health care providers without an approved treatment protocol. Simply put, this is the continuing underlying treacherous terrain of Lyme, throwing up challenges in both diagnostics and therapeutics.

ALL ABOUT KIDS WITH LYME, PANS, MOLD ILLNESS

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

In this conversation between Ticktective™ host Dana Parish and Harvard-trained pediatric infectious diseases specialist 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!

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

Ticktective Podcast Transcript

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?

Calling All Scientists: Bay Area Lyme Foundation Now Accepting Applications for 2022 Emerging Leader Award

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Calling All Scientists: Bay Area Lyme Foundation Now Accepting Applications for 2022 Emerging Leader Award

Grant aims to inspire new research for the diagnosis and treatment of Lyme disease

PORTOLA VALLEY, California, December 6, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2022 Emerging Leader Awards (ELA), which recognize U.S. researchers from academia or the private sector who bring new approaches to the field of Lyme disease and embody the future of Lyme disease research leadership. At least two grants in the amount $100,000 each will be awarded. Proposals must have a defined scientific approach and rationale that can advance diagnostics or treatments for Lyme disease, and applicants are encouraged to bring innovative learnings from other therapeutic areas to their research projects. Applications will be accepted through March 15, 2022, at midnight Pacific Time. The full criteria and application for this grant award can be found here.

“The world is seeing firsthand the damage that infections can cause—both in acute and chronic forms. Just has COVID has encouraged collaboration, we hope that existing Lyme scientists as well as scientists from other disease areas will apply for this grant, offering new hypotheses and technologies to diagnose and treat Lyme and other tick-borne disease,” said Wendy Adams, research grant director, Bay Area Lyme Foundation.

Bay Area Lyme’s November 2021 Speaker Series Event: Bringing Hope and Support to Lyme Patients in San Diego

By Bay Area Lyme Foundation

BAL Happenings Series

Why is the human immune system so complicated? Why are Lyme and tick-borne diseases so challenging for medical scientists to understand and for doctors to treat? And what is happening in the world of Lyme disease research that may offer hope to patients suffering from the effects of Lyme and TBDs on their continually assaulted immune systems?

On November 3, Bay Area Lyme Foundation and Sanford Burnham Prebys Medical Discovery Institute jointly hosted an audience of physicians, scientists, patients, supporting family members, and medical providers in La Jolla, CA, to hear a panel of distinguished speakers address the subject of how the human immune system responds to the bacterial or viral assault of a tick-borne infection.

The San Diego event was part of Bay Area Lyme Foundation’s ongoing Distinguished Speaker Series. The Speaker Series format brings together a panel of distinguished individuals, typically including a researcher, a physician, and a Lyme patient advocate. By giving varied perspectives on topics relevant to Lyme and tick-borne diseases (TBDs), Bay Area Lyme provides a platform for the discussion of new scientific discoveries and other developments relevant to Lyme. The series also fosters community-building for patients seeking answers to the challenges of this debilitating disease.

Part of this session’s discussion explored the frustration experienced by countless Lyme patients that most medical providers and physicians are so poorly educated regarding Lyme and TBDs. “They don’t test for all types of TBDs, don’t agree on treatments, aren’t trained to recognize or treat heart problems caused by TBDs, and over-prescribe powerful immune suppressants which can be deadly for TBD patients,” criticized David Haney, PhD, biochemist, patient advocate and panelist. “San Diego physicians are under the mistaken impression that there is no Lyme disease in California, but it has been established in the state since the 1970s. People also travel, and a tick-borne infection is more than just Borrelia burgdorferi. This has been proven in multiple studies,” he added. “Academic studies show that Babesia duncani and several species of tick-borne Borrelia are more prevalent in the West than the East.”

“Traditional healthcare needs to learn to diagnose and treat tick-borne diseases,“

– David Haney, PhD

New Therapeutics for Infectious Diseases

By Bay Area Lyme Foundation

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

This pandemic has brought many different modalities in diagnostics, drug development and vaccines to the popular press. In the Tick-borne Disease (TBD) community, we have seen the issues that arise when the timely diagnosis and treatment of infectious disease are hampered by insensitive diagnostics and ineffective treatments.

It bears repeating however, that drugs that fight the infection in question (antibiotics, antiparasitics, or antivirals) are a large part of any eventual solution to an outbreak, especially in advance of a vaccine (see HIV). Antimicrobial therapeutics help keep the pathogen from replicating uncontrolled, allowing the complicated immune system processes to catch up to it, control it and then eradicate it.

One specific treatment modality is being widely discussed: monoclonal antibodies (mAbs). These are the drugs upon which the whole biotech industry and companies like Genentech, Biogen and Amgen were literally built. Six out of the top 10 drugs by sales are mAbs, mostly for oncology and autoimmune disease indications. However, mAbs have not been commonly used for infectious disease (with one major exception we’ll talk about later).

What are monoclonal antibodies? How do they work?

Antibodies are proteins made by the mammalian immune system. They are a workhorse of the acquired immune response and fight specific antigens, which can be anything from an invading pathogen to an aberrant cell or cytokine that needs destruction. Monoclonal antibodies as a drug class are also very specific and only bind to one antigen. They can bind to a single receptor on the outside of a cell, so that cell can’t receive or send out a message. Or the cell can be tagged so the immune system recognizes the cell as foreign and can destroy it. Binding only one target is important to reduce side effects caused by binding to multiple targets.

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.

First West Coast CME Program on Tick-borne Disease Provides New Data, Insights from Researchers

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

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.”

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

By Bay Area Lyme Foundation

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.

Bay Area Lyme Foundation Sees Turning Point for Lyme Disease in 2017

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Sees Turning Point for Lyme Disease in 2017

Organization Leaders Honored with HHS Appointment, Jane Seymour’s Open Hearts Award, Among Other Pivotal Events

PORTOLA VALLEY, Calif., December 21, 2017—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced that the organization granted $2 million in 2017 for Lyme research and education, and saw an increase of engagement from scientists, the government and noted celebrities. Studies funded by the foundation and published in 2017 provide significant support to the widely-debated scientific belief that Lyme bacteria persist after standard antibiotic treatment. The foundation continues to demonstrate success in bringing new scientific talent to the fight against tick-borne diseases.