Ten Years of Data, One Clear Message: We Need to Do Better for Lyme Patients

Lyme Disease Biobank

Bay Area Lyme Leading the Way Series

By Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank

“The window for effective antibiotic treatment is narrow. Miss it—because of a false negative test, because symptoms are dismissed, or because follow-up doesn’t happen—and patients can develop persistent Lyme, which can be debilitating.”

– Dr. Liz Horn

Lyme Disease Biobank patient sample

After a decade of collecting blood samples, testing the samples, tracking patient outcomes, and analyzing data from more than 800 participants, the numbers tell a powerful story about the gaps in our understanding of how we diagnose and treat early Lyme disease. And it’s made all the more urgent by this summer’s explosion in blacklegged (deer) tick populations across endemic areas.

Our latest Lyme Disease Biobank study looked at more than 250 patients with early Lyme disease on Long Island and in Central Wisconsin who provided a blood draw at enrollment and a second blood draw three months later. Published recently in Frontiers in Medicine, these 10 years of data confirm a few important points that have been known in the Lyme field for years, but the wider medical community may not be aware of.

LymeLnk and Bay Area Lyme Foundation Partner to Bridge the Gap Between Research and Public Awareness

LymeLnk

Bay Area Lyme Leading the Way Series

 

“Science moves minds and stories move hearts. This partnership connects two essential parts of the Lyme ecosystem: the research that advances medicine and the communication that inspires action. Together, we’re making education and prevention more accessible.” 

– Eva Scarano, Founder and Executive Director, LymeLnk

LymeLnk is a new nonprofit combating Lyme and tick-borne diseases (Lyme+) through community storytelling and education. Founded in 2024 at Parsons School of Design, LymeLnk was born out of founder Eva Scarano’s personal nine-year journey with Lyme+, during which she chose to create meaning from her isolated quest for health.

Eva’s Lyme+ journey began in 2016 with a textbook case: a bull’s-eye rash and flu-like symptoms. Among the fortunate few to receive a prompt diagnosis, she underwent three grueling months of antibiotics and supplemental treatment and was asymptomatic for two years. Everything changed in 2019 when she moved into a mold-infested apartment, triggering a collapse of her immune system—her Lyme markers were back and higher than ever. Years later, Eva had just begun graduate school at Parsons when she found herself at her “rock bottom.” Struggling to remember class material from the day prior or make it past 3:00 pm without a nap, she remained determined to continue her studies and reclaim her health.

Progress from Partnership: Reflections from the Frontlines

Meghan Bradshaw

Bay Area Lyme Leading the Way Series

Guest blog by Lyme Advocate, Meghan Bradshaw, Government Relations Manager, Center for Lyme Action

“Bay Area Lyme Foundation’s leadership, fundraising, and commitment to research and patient advocacy have been a bedrock.” 

– Meghan Bradshaw

When I look back over the past few years, I’m struck by how much has changed—for me personally, and for the broader Lyme and tick-borne disease community. And perhaps most of all, I see how partnership and persistence have turned what once felt impossible into genuine progress.

Turning Pain into Purpose as a Living Donor

Lyme Disease Biobank

One of the most powerful examples of Bay Area Lyme’s impact is Lyme Disease Biobank—a groundbreaking resource that provides researchers with high-quality, well-characterized samples to accelerate discoveries in diagnostics and treatment.

I know firsthand what it means to contribute to that effort—with my own body. As a living donor, I’ve donated multiple joints to the Biobank following joint replacement surgeries. It was, without exaggeration, a painful process. But I did it because I believe in turning my suffering into solutions—knowing that those tissues may one day help someone else get diagnosed sooner or treated more effectively.

Justin Timberlake’s Lyme Diagnosis and His Struggle to Be Believed

Justin Timberlake

Bay Area Lyme Spotlights Series

 

Medical skepticism isn’t just cruel, it’s physically, mentally, and emotionally harmful.

When Justin Timberlake revealed his Lyme disease after weeks of criticism for low-energy performances during his recent tour, the Internet did what the Internet does: It immediately questioned whether he was telling the truth.

The skepticism was rife and merciless. Reddit threads quickly surfaced with accusations that he was making excuses, faking illness, or using Lyme as a convenient cover story. “There must be something else going on,” people assumed. “Chronic Lyme isn’t a thing,” they said.

While it’s almost expected to see anonymous Internet commenters take aim at a major celebrity going through a low point, for the millions of Americans living with Lyme disease, Timberlake’s experience is not surprising at all.

New Bay Area Lyme Foundation Study Reports That Only One-Third of Early Lyme Patients with On-Going Symptoms Followed up with their Healthcare Providers

Lyme Disease Biobank

FOR IMMEDIATE RELEASE

 

New Bay Area Lyme Foundation Study Reports That Only One-Third of Early Lyme Patients with On-Going Symptoms Followed up with their Healthcare Providers

The new research, published in Frontiers in Medicine, points to need for greater follow-up from medical professionals to address potential treatment failures. 

PORTOLA VALLEY, Calif., July 10, 2025—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announced the publication of new research in Frontiers in Medicine based on data from Bay Area Lyme Foundation’s Lyme Disease Biobank. This large-scale study conducted over 10 years at sites on the East Coast and the Upper Midwest demonstrates the need for improved diagnostics and increased follow-up by medical professionals for Lyme disease patients.

Only one-fifth of study participants (23%), enrolled with signs and symptoms of early Lyme, were positive by the CDC’s standard two-tiered test for Lyme disease, which supports previous research that found that it misses up to 70% of cases of early-stage Lyme disease. Further, approximately 1 in 5 patients reported ongoing symptoms at 3 months, including joint pain, fatigue, and muscle pain yet only one-third (35%) of these participants followed up with their healthcare providers about these ongoing symptoms. Due to difficulties in diagnosing Lyme disease and resulting treatment delays, as many as two million people may suffer from persistent Lyme disease, which can be debilitating.

Accurate, timely detection of Lyme disease is critical to preventing long-term complications. Moreover, follow-up from medical professionals with all patients after they complete antibiotic treatment could improve outcomes and reduce the burden of Lyme disease,” said lead author Liz Horn, PhD, MBI, Principal Investigator of Lyme Disease Biobank, a Bay Area Lyme Foundation program which helps to accelerate research by collecting, storing and providing much-needed human biological samples for use in research. “Our data also confirm the limitations of serology testing in early Lyme disease and after antibiotic treatment.”

The Lyme-Mold Connection: An Incredible Guide to Healing

Dr Jill Crista

Bay Area Lyme Quick Bites Series

 

“I think I prevented a lot of chronic Lyme cases by doing adequate early treatment. But I had a subset of patients who just were not getting better. These cases had either a current or a past exposure to mold.”

– Jill Crista, ND

In this latest episode of Ticktective, our host, Dana Parish, talks with Dr. Jill Crista, a leading expert on the diagnosis and treatment of toxic mold exposure and illness. Dr. Crista started her practice in southern Wisconsin, which is often in the top five states for Lyme disease cases, even though Lyme is often thought of as a Northeast issue.

Click here to watch or listen now.

Parish and Crista discuss the complex nature of mold toxicity, including its impact on the immune system, the brain, and various organ systems. Crista emphasizes the importance of identifying the underlying causes of mold exposure, such as water damage and poor indoor air quality, rather than just addressing the symptoms.

Dr. Neil Nathan: When You’re Not Getting Better. Best-selling Author and Chronic Illness Expert has Answers.

Dr Neil Nathan

Bay Area Lyme Quick Bites series

 

“If you have Lyme disease and your treatment is stalled out or not moving or you’re not progressing the way you should, please check for mold. It’s almost certain that’s what you need to be working on next.”

– Neil Nathan, MD

Dr. Neil NathanOur Ticktective host, Dana Parish, interviews Dr. Neil Nathan, renowned physician and best-selling author. Dr. Nathan specializes in treating chronic illnesses, particularly those related to environmental toxins, vector-borne infections, and complex systemic disorders. With decades of experience in clinical practice, he focuses on understanding the impact of toxins on health and is dedicated to helping patients recover from illnesses that conventional medicine often struggles to address. His bestselling book, Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Other Chronic Environmental Illnesses, provides a comprehensive guide to recognizing, diagnosing, and treating various chronic conditions linked to environmental factors.

Click here to watch or listen now.

Award-Winning Short-Form YouTube Series ‘Girl at a Bar’ Depicts Challenges of Living with Chronic Lyme

Tracey Mullholland

Bay Area  Lyme Spotlights Series

 

“I hope people with Lyme can see themselves on screen and they resonate with it.” 

– Tracy Mulholland 

We sat down with Tracy Mulholland, actress, writer, producer, and Lyme patient, who wrote, produced, and stars in the award-winning short-form series Girl at a Bar, made possible by a grant from Bay Area Lyme Foundation. The short-form series, now available on YouTube, aims to provide an entertaining, accessible narrative to raise awareness about Lyme. Tracy hopes it will resonate with those living with chronic conditions and spark more conversations and content about these experiences. We discuss Tracy’s personal story as the inspiration behind the show and how the series explores challenges relevant not only to people navigating chronic illness but also to life in general. Conversation topics include:

  • How the show is inspired by the creator’s own experiences with Lyme disease, including the social isolation and impacts on relationships that can occur during chronic illness. 
  • An exploration around themes of identity, vulnerability, and empathy, drawing parallels to other chronic and invisible illnesses beyond Lyme. 
  • In addition to the short-form series, Tracy is launching a related spin-off podcast series where others are challenged to push their comfort zones.
  • Each episode aims to humanize the Lyme experience, foster greater understanding, and inspire more diverse storytelling about chronic illnesses in media and entertainment.

Bay Area Lyme Foundation Opens Applications for 2025 Emerging Leader Award and Research Grant

ELA Award 2026

FOR IMMEDIATE RELEASE 

Bay Area Lyme Foundation Opens Applications for 2025 Emerging Leader Award and Research Grant

In its tenth year, the annual grant encourages novel approaches to revolutionizing diagnosis and treatment of tick-borne diseases

PORTOLA VALLEY, Calif., October 31, 2024 – Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., invites innovative researchers from academia and the private sector to apply for the 2025 Emerging Leader Awards (ELA). These awards recognize those advancing novel approaches in Lyme disease diagnostics and treatments, while embodying the future of Lyme disease research leadership. This year, in its tenth anniversary, Bay Area Lyme Foundation’s ELA will present two $150,000 awards for researchers who are at the post-doctoral level through associate professor level or equivalent.

While applicants must have a defined scientific approach to advancing diagnostics and/or therapeutics for Lyme disease, the grants are open to researchers from other therapeutic areas in addition to those who have previously investigated Lyme disease. Applications will be accepted through March 7, 2025 at 11:59pm, Pacific Time. The full criteria and application for this award can be found at www.bayarealyme.org/our-research/emerging-leader-award/.

“The global impact of both acute and chronic infections has never been more apparent, and tackling an infectious disease as complex as Lyme requires innovative approaches and concerted efforts to drive progress in diagnostics and treatment,” said Wendy Adams, research grant director Bay Area Lyme Foundation. “Our goal with the Emerging Leader Award is to inspire ambitious and creative scientists to take on the challenge of advancing accurate diagnostics and effective therapeutics for various stages of tick-borne diseases.”

Toxic Load: Healing from Tick-borne Disease and Autoimmune Illness 

Jill Carnahan, MD

BAL “Quick Bites” Series

 

“If you have an autoimmune disease, our allopathic system does not have great answers that are solution-based or root cause-based to chronic complex illness.”

– Jill Carnahan, MD

In this edition of our Ticktective video and podcast series, Dana Parish sits down with Jill Carnahan, MD, a functional medicine doctor specializing in Lyme disease, tick-borne illnesses, mold toxicity, and other complex chronic health issues. Carnahan discusses her background growing up on a farm and how it influenced her approach to medicine. She shares her experience being diagnosed with breast cancer and the potential environmental factors, such as atrazine, that may have contributed to it. Carnahan talks about her cancer treatment and her belief in finding and addressing root causes in medicine. She then discusses her expertise in Lyme and tick-borne diseases, explaining how she evaluates and treats these conditions. She emphasizes the need for a clinical diagnosis of Lyme disease due to the limitations of mainstream tests. Carnahan also sheds light on the connection between mold exposure and chronic illness, including dementia and psychiatric disorders. She provides insights into testing, detoxification, and treatment strategies for mold-related illnesses. The interview concludes with information about connecting with Dr. Carnahan’s clinic, her book, and her documentary.