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

Ticktective interview with Dana Parish and Amy Proal, PhD

Ticktective™ with Dana ParishBAL 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.

Amy Proal, PhD

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?

New Study Finds American Dog Tick Populations Expanding into Colorado, and Identifies Rocky Mountain Wood Ticks in 5 More Counties Than Documented by CDC

FOR IMMEDIATE RELEASE

New Study Finds American Dog Tick Populations Expanding into Colorado, and Identifies Rocky Mountain Wood Ticks in 5 More Counties Than Documented by CDC

Citizen scientists contributing to Bay Area Lyme Foundation’s Free Tick Testing program assist in identifying ticks capable of carrying disease in Colorado

Portola Valley, CA, October 25, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of a study published in the November issue of the peer-reviewed journal Ticks and Tick-borne Diseases demonstrating that ticks capable of carrying diseases, including Rocky Mountain spotted fever, Colorado tick fever and the neurotoxin that causes tick-borne paralysis, pose an emerging threat in Colorado. The results show American dog ticks are very much present in 16 counties in Colorado, where they were not previously identified by the CDC, and Rocky Mountain wood ticks are found in 38 of the 64 Colorado counties, whereas they had only been identified in 33 previously. The study leveraged several sources for the study, including ticks collected by citizen scientists as part of a free tick testing program offered by the Bay Area Lyme Foundation.

“The critical takeaway from this study is that Coloradans need to take preventative measures against ticks when outdoors, such as tick checks, and doctors should be more vigilant for symptoms of tick-borne diseases including those carried by Rocky Mountain wood ticks and American dog ticks,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “This ecology study illustrates the power of leveraging citizen science, and we are grateful for the more than 20,000 ticks that were submitted to our national program and made this study possible.” 

Conducted by researchers from Colorado State University and funded by the Bay Area Lyme Foundation, the study aimed to quantify the current county-level distribution of Rocky Mountain wood ticks, Dermacentor andersoni, and American dog ticks, Dermacentor variabilis.  The study evaluated data from ticks collected by citizen scientists and evaluated  at Northern Arizona University as part of Bay Area Lyme Foundation’s Free Tick Testing program, distribution data from the Colorado Department of Public Health and the Environment,  veterinary surveillance at Oklahoma State University, and literature data.

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

Lyme Disease Biobank Collection

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 Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

2021 Emerging Leader Awards

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

Winners Nichole Pedowitz PhD, of Stanford University and Peter Gwynne PhD, of Tufts University will focus on developing novel diagnostic tests that can identify patients with Lyme disease

PORTOLA VALLEY, Calif., August 9, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the recipients of the 2022 Emerging Leader Awards (ELA), which are designed to support promising scientists who are advancing development of accurate and effective diagnostic tests. Both awardees this year are focused on diagnostics, which is particularly important as the current gold standard diagnostic test has been shown to be insensitive in up to 60% of early-stage disease. 

This year’s winners are Nichole Pedowitz, PhD, of Stanford University, who will receive $100,000 for her work to develop a new rapid diagnostic to directly test for the bacteria that causes Lyme disease and Peter Gwynne, PhD, of Tufts University, who will receive $100,000 to further identify antibodies which may be markers of persistent Lyme disease infection.

“The lack of a reliable test for Lyme disease makes it not only impossible to ensure that patients receive prompt, appropriate care but also challenging for scientists and clinicians to evaluate emerging treatments,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “Our hope is that Drs. Pedowitz and Gwynne will make strides toward the development of diagnostic tests that will be effective in identifying Lyme patients at various stages of the disease.”

Patient Samples Fuel Development of Innovative Test to Diagnose Early Lyme Disease

Lyme Disease Biobank

BAL Leading the Way Series

 

Lyme Disease Biobank

 

A new type of Lyme disease test aimed at early-stage infection detection is hitting doctors’ offices, and we all should thank Lyme patients for making this happen. This test named T-Detect Lyme, was recently unveiled by Adaptive Biotechnologies, and is an advanced indirect-detection blood test that allows for detection of an acute Lyme infection earlier than antibody response tests.

Adaptive Biotechnologies using Lyme Disease Biobank samples
Courtesy Adaptive Biotechnologies

Our Lyme Disease Biobank (LDB) and Dr. John Aucott’s SLICE Lab at Johns Hopkins University provided the Lyme patient blood samples for Adaptive’s new T-Detect Lyme test development. The LDB, a program of Bay Area Lyme, was created in 2014 and began collecting patient samples in 2015 specifically to drive this form of diagnostic innovation. By engaging Lyme patients and providing well-characterized samples to approved researchers and partnering with innovative organizations like Adaptive, the LDB research engine is now delivering long-planned-for results.

“This breakthrough from Adaptive validates the power of patient-driven research. Without the participation of patients who gave blood to our Lyme Disease Biobank, this impactful new test could not have been developed,” commented Linda Giampa, executive director, Bay Area Lyme Foundation. “We wish to thank all the patients who came forward to participate in this important program and to encourage others to give samples.”

Fueling the Research Engine

Lyme Disease Biobank

BAL Leading the Way Series

 

How a chance meeting and the harnessing of big data led to a research initiative that’s finding answers in Lyme and tick-borne disease

Many different groups comprise the Lyme disease community including patients, their families, healthcare providers, researchers and nonprofit organizations. These nonprofit organizations and foundations may differ in size, structure, fiscal basis, focus and approach, but in one important aspect they are united: the search for answers.

This search for answers in the realm of Lyme and tick-borne diseases has served as a unifying driver, even when dissent and controversy has sometimes fragmented the Lyme community.  And despite what seems to be a constant uphill battle for recognition and legitimacy of Lyme and tick-borne infections, many believe that we’re on the brink of major breakthroughs to help patients and doctors unlock the medical mysteries that make these infectious diseases so confounding. Two people cautiously optimistic about where we are in the search for answers about Lyme are Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, and Lorraine Johnson, JD, MBA, Chief Executive Officer, LymeDisease.org and Principal Investigator MyLymeData.

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

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?

Bay Area Lyme Foundation Funds $8M in Tick-borne Disease Research During the Pandemic

Bay Area Lyme Foundation Funds $8M in Tick-borne Disease Research During the Pandemic

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Funds $8M in Tick-borne Disease Research During the Pandemic

Foundation Embraces National Focus on Infectious Diseases as Education Tool

PORTOLA VALLEY, CA, January 25, 2021—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced that the organization has raised more than $8 million since the beginning of the pandemic of which 100% will be used directly for research and education programs focused on achieving its mission of making Lyme disease easy to diagnose and simple to cure. In 2022, Bay Area Lyme will mark its 10th anniversary, and throughout this year will be reflecting on a decade of achievements by the foundation and the Lyme community while acknowledging the significant challenges that still lie ahead. 

“Although the pandemic presented us with many extraordinary hurdles, it also helped people understand the complicated aspects of infectious diseases—including the importance of accurate diagnostics, the role of antibodies, and the power of effective treatments—all of which are—and continue to be—huge factors in our fight against Lyme and tick-borne diseases,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “The similarities between Lyme and COVID-19 clearly show the critical nature of scientific pursuit, progress and education. The foundation demonstrates consistent, measurable progress unlocking the mysteries of tick-borne diseases, which remain one of the most important health crises of our time.”

What To Do If You Find a Tick

Ticktective Podcasts

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.

Lyme With a Side—or Two—of Babesia: The Most Common Co-Infection that is Frequently Missed

Babesia parasites inside red blood cell

Written by: Wendy Adams, Research Grant Director & Advisory Board Member, Bay Area Lyme Foundation

Unless you’ve been living under a rock for the last few years, you’ll have learned that tick-borne diseases are on the rise across the United States. Many theories exist as to why this is the case. However, most scientists that study ticks and their habitats agree that a combination of reasons—including climate change and human encroachment into tick habitats—are at least partially to blame.

Although Lyme disease (caused by the bacterium Borrelia burgdorferi) is the most common disease that humans acquire from tick bites, ticks can unfortunately transmit several other bacteria, viruses, and parasites to humans. Multiple infections can even be transmitted during the same bite. The confusing and overlapping disease symptoms caused by multiple infections makes it extremely difficult for doctors to recognize, diagnose and treat the different infections.