Lyme disease Archives - Bay Area Lyme Foundation

Why Lyme Disease Remains So Difficult to Diagnose and Why There’s New Reason for Hope

By Bay Area Lyme Foundation

Bay Area Lyme Spotlights Series

Guest Blog by Fred Diamond, author and host of the Love, Hope, Lyme Podcast

“This is solvable. It just needs continued focus.”

– David Walsey, Executive Director, Bay Area Lyme Foundation

For many Lyme disease survivors and families, the journey toward answers can feel overwhelming, confusing, and painfully isolating. Symptoms often linger for years. Tests come back negative despite debilitating illness. Patients bounce from doctor to doctor searching for someone who understands what they are experiencing.

For David Walsey, Executive Director of Bay Area Lyme Foundation, this challenge is deeply personal, as he shared on the Love, Hope, Lyme Podcast.

Before stepping into his leadership role at the Foundation, Walsey and his family spent nearly a decade navigating the complexities of tick-borne illness after one of their children became severely ill.

“It’s really a journey not to wish upon anybody,” Walsey shared. “From getting the diagnosis, to figuring out the treatment, to just knowing really how to treat.”

From the Field: Where Tick Bite Prevention Meets Real Life

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight series

AEOE Spring Conference 2026 | Springville, California

At this year’s AEOE Spring Conference 2026, Bay Area Lyme was once again on the ground, meeting the people who shape how the next generation experiences the outdoors.

And the message was clear: the need for tick-bite prevention education has never been greater.

Jo Ellis, Director of Education, connected with more than 300 naturalists, many of them early in their careers, deeply passionate, and actively leading outdoor programs for children across California. Nearly 40% were first-time attendees, bringing energy and reach, but often little awareness of tick exposure risk in the state.

The response to our presence was immediate and overwhelming.

“The exponential impact and reach of this program cannot be underestimated, and it’s one of our most important outreach events educating high-risk individuals about Lyme in California.”

– Jo Ellis, Director of Education, Bay Area Lyme

“We Take Every Case Personally”: Understanding Lyme Disease Biobank’s Tissue Recovery Program

By Bay Area Lyme Foundation

Bay Area Lyme Leading the Way series

A behind-the-scenes look at how Wauchita Green and Pauline Lui help turn patients’ tissue donations into research that is changing the future of Lyme disease.

Lyme Disease Biobank, a program of Bay Area Lyme Foundation, partners with the National Disease Research Interchange (NDRI) to help advance Lyme disease research. Together, they enable patients to contribute tissue samples, collected during surgery or after death, which the Biobank shares with approved scientists studying infection and immune response. NDRI’s nationwide recovery network ensures these precious donations are handled with care and respect. This partnership helps turn patient generosity into real progress, accelerating the search for better diagnostics, treatments, and ultimately, a cure.

The Biobank also partners with MyLymeData, allowing Lyme patients registered with the Biobank to link their MyLymeData profile to their tissue donation, if desired.

When families whose lives have been impacted by Lyme disease call to talk about donating tissue, they’re often overwhelmed. But thankfully, the NDRI private donor team is standing by 24/7/365 to help. Patients and families typically want to know:

“How much does this cost?”
“What actually happens?”
“Is this going to be complicated?”

Bay Area Lyme Ventures Invests in Galaxy Diagnostics to Advance Tick-Borne Disease Testing

Galaxy Diagnostics and Bay Area Lyme Ventures

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Ventures Invests in Galaxy Diagnostics to Advance Tick-Borne Disease Testing

Partnership Aims to Accelerate Innovation in Diagnostic Tools for Patients with Complex Tick and Vector-Borne Illnesses

DURHAM, NC., June 2, 2026 – Galaxy Diagnostics, a leader in advanced vector-borne disease testing, has announced a strategic investment from Bay Area Lyme Ventures, the newly launched impact investment fund created by Bay Area Lyme Foundation to accelerate innovation in Lyme and tick-borne disease diagnostics and therapeutics.

With reported tick-borne disease cases more than doubling in the United States over the past two decades, the investment underscores the growing urgency for more accurate and accessible diagnostic tools for complex vector-borne illnesses.

Founded by leaders in vector-borne disease research, Galaxy Diagnostics was created to address a critical gap in medicine: the detection of stealth pathogens that often go undiagnosed by conventional testing. The company has become known for advancing diagnostics designed to help providers better identify complex infections associated with Lyme and other vector-borne diseases.

Galaxy’s growing portfolio includes advanced molecular testing, antigen detection technologies, and diagnostic collaborations to translate emerging scientific discoveries from the lab into real-world clinical tools. Backed by hundreds of peer-reviewed publications and partnerships with leading academic researchers, the company continues to advance new standards for precision in tick-borne disease diagnostics.

“We are honored to receive support from Bay Area Lyme Ventures at a critical moment for tick-borne disease diagnostics,” said Nicole Bell, CEO of Galaxy Diagnostics. “Bay Area Lyme has funded much of the foundational research that Galaxy is now bringing to patients — the investment in Galaxy reflects their commitment to seeing those innovations through to the clinic, and to ensuring that better diagnostics actually reach the people who need them.”

Bay Area Lyme Foundation Raises $900,000 at LymeAid 2026, Presenting Inaugural Neil L. Spector, MD, Legacy Award and $300,000 in Emerging Leader Grants

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Raises $900,000 at LymeAid 2026, Presenting Inaugural Neil L. Spector, MD, Legacy Award and $300,000 in Emerging Leader Grants

Dana Carvey Emceed; Chris Isaak Performed at Annual Gala Advancing Lyme and Tick-Borne Disease Research

PORTOLA VALLEY, Calif., May 27, 2026 — Bay Area Lyme Foundation, the nation’s leading public charity funder of Lyme disease research, raised $900,000 at LymeAid 2026, its annual benefit gala, over the Memorial Day weekend. The evening brought together leading scientists and clinicians, patients, and supporters united by a shared conviction: Lyme disease and other tick-borne infections should not be hard to diagnose, hard to treat, or easy to dismiss, and the science to change that is within reach.

Emmy Award-winning comedian Dana Carvey served as Master of Ceremonies. “This was my third time hosting LymeAid, and let me tell you, this community has more determination than my Church Lady character at a bake sale,” said Carvey.

Platinum-selling, GRAMMY-nominated singer Chris Isaak and his band Silvertone closed the evening in concert.

“Saturday night, LymeAid 2026 attendees came together in support of patients and to advance the research producing better diagnostics, new treatment approaches, and long overdue answers for patients with Lyme and other tick-borne diseases,” said David Walsey, Executive Director of Bay Area Lyme Foundation. “Bay Area Lyme exists to fund exactly that work, because this is a solvable problem and there are too many patients still searching for answers, losing years to inadequate diagnostics and treatment options.”

Empowering the Next Generation of Lyme Prevention Leaders: Tick-bite prevention tips for Girl Scouts

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight series

“When it comes to tick bites, knowing how to protect yourself makes a big difference. Wear long sleeves and pants, use insect repellent, and check your body (and your pets!) carefully after outdoor play. We are excited to share this information, so more people can enjoy the outdoors safely.”

– Amara and Audrey

Bay Area Lyme is proud to recognize Girl Scouts Amara and Audrey, whose Silver Award project, Tick Tactics: Outsmarting Nature’s Sneakiest Pests, has been officially accepted by Girl Scouts of Northern California.

Their work transforms complex science into engaging, accessible education, helping young people understand the risks of tick-borne diseases and how to stay safe outdoors.

New Bay Area Lyme Foundation Study Shows Common FDA-Cleared Lyme Tests Miss 64-78% of Early Cases, Underscores Urgent Need for Improved Diagnostics

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

New Bay Area Lyme Foundation Study Shows Common FDA-Cleared Lyme Tests Miss 64-78% of Early Cases, Underscores Urgent Need for Improved Diagnostics

Research published in the Journal of Clinical Microbiology

PORTOLA VALLEY, Calif., April 21, 2026 –Bay Area Lyme Foundation, a national nonprofit and leading sponsor of tick-borne disease research in the US, today announced the publication of new research in the Journal of Clinical Microbiology based on data from its Lyme Disease Biobank. The study found that the commonly used FDA-cleared diagnostic testing methods available to providers and major national diagnostic laboratories are highly insensitive and miss 64-78% of early Lyme disease cases, including those who present with the characteristic erythema migrans (EM) Lyme rash.

“This study demonstrates that common two-tiered Lyme tests, utilized for decades, often fail to detect early Lyme disease and are leaving patients behind, highlighting a critical need for improved medical education on the limitations of current diagnostics,” said Liz Horn, PhD, MBI, Principal Investigator of Lyme Disease Biobank and lead author of the study. “Our findings also add to the evidence that improved diagnostics, ideally those that directly detect the bacteria that cause Lyme disease, are urgently needed.”

This large-scale, head-to-head study comparing 2 standard two-tiered testing (STTT) and 2 modified two-tiered testing (MTTT) diagnostic algorithms (the commonly used Lyme disease diagnostic algorithms) confirms that the sensitivity of two-tiered testing algorithms is low among patients with early infection. For the 107 early Lyme disease cases evaluated, the various testing algorithms missed 64-78% of early Lyme cases. Overall, only 39% (42/107) of participants with early Lyme disease were STTT or MTTT positive by any of the 4 algorithms.

New Peer-Reviewed Publication Highlights Evidence of Mother-to-Child-Transmission of Lyme Disease Bacteria During Pregnancy and Calls for Urgent Research

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

New Peer-Reviewed Publication Highlights Evidence of Mother-to-Child-Transmission of Lyme Disease Bacteria During Pregnancy and Calls for Urgent Research

New paper in Frontiers in Medicine reports results of meeting of international researchers at the Banbury Center of Cold Spring Harbor Laboratory

PORTOLA VALLEY, Calif., April 9, 2026 –Bay Area Lyme Foundation, a national nonprofit and leading sponsor of tick-borne disease research in the US, today announced publication of a new peer-reviewed article in Frontiers in Medicine examining the transmission of the Lyme bacteria during pregnancy. The publication points to observational research demonstrating that Lyme bacteria are capable of being transmitted from mother to unborn child and recognition by both the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) of the potential for mother-to-child transmission. With approximately 500,000 Americans diagnosed with Lyme disease each year and the related correlation of transmission during pregnancy being associated with serious adverse pregnancy outcomes, such as miscarriage, stillbirth, or congenital infection that occur in some cases, the paper concludes that the clinical impact of Lyme disease on pregnancy and infant health is an important public health issue that has been insufficiently studied.

“As an infectious disease pediatrician, I have seen firsthand the impact of Lyme disease in children and have suspected that the infection may have been passed from mother to child during pregnancy in a number of my patients, based on their medical histories,” said Charlotte Mao, MD, of Bay Area Lyme Foundation and a co-author of the study. “The first case studies of mother-to-child transmission were observed in the 1980s, yet decades later, we still lack sufficient research and clear, evidence-based guidance on Lyme in pregnancy and adverse pregnancy outcomes. This is an important public health issue and underscores the urgent need for rigorous studies to fully understand the risks and support patients and healthcare providers in making informed decisions that better protect maternal and infant health.”

Study authors highlight the great need for real-world studies clarifying how Lyme Borrelia, the bacteria that cause Lyme disease, the most common vector-borne disease in the US, behaves during pregnancy, and quantifying the outcomes for mothers and infants. Specifically, the paper suggests the creation of large, prospective studies of pregnant individuals with Lyme disease, including systematic long-term clinical follow-up of their children, as well as the importance of collecting biological samples from mothers, placentas, and infants through coordinated biorespositories for use in current or future studies.

A Leader Who Understands the Journey: Welcoming David Walsey as Bay Area Lyme Foundation’s New Executive Director

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight Series

“Science drives our mission, but patient stories remind us why the science matters.”

– David Walsey

As David Walsey steps into his new role as Executive Director of Bay Area Lyme Foundation, he brings more than professional expertise. He brings lived experience of diagnostic uncertainty, immune dysfunction, co-infections, and the long arc many families travel before answers emerge. For patients, caregivers, and supporters of Bay Area Lyme, David’s leadership signals both continuity and momentum: a future rooted in rigorous science, compassionate leadership, and hope grounded in progress. “It’s been a long journey to get here,” David says. “We’ve spent nearly a decade navigating tick-borne disease as a family. That experience changed everything for us.” Dana Parish interviewed David as part of our Ticktective^™ video podcast series. Watch or listen to the complete interview.

When Symptoms Don’t Fit the Textbook

Nearly ten years ago, David’s son began experiencing a constellation of symptoms that defied easy explanation. Despite multiple medical evaluations, no unifying diagnosis emerged. When Lyme disease was finally identified, the family initially felt relief. “I thought this was a solvable, short-term problem,” David recalls. “You treat it, and life goes back to normal.”

Improving Lyme Diagnostics, Biomarkers, and Treatment: Inside Dr. Peter Gwynne’s Research

By Bay Area Lyme Foundation

Bay Area Lyme Leading the Way series

“I wanted to be doing work that was driven by clinical need… and there are a lot of clinical needs in Lyme disease.”

– Peter Gwynne, PhD

For too many people with Lyme disease, the journey begins with uncertainty. A missed rash. A negative test. Symptoms that don’t make sense. A diagnosis that comes too late, or not at all. Bay Area Lyme Foundation believes this must change. And we believe change happens through funding rigorous science, innovative thinking, and supporting researchers willing to tackle the hardest questions head-on.

One of those scientists is Tufts researcher Peter Gwynne, PhD, a microbiologist whose work sits at the cutting edge of Lyme research and is the recipient of our 2022 Emerging Leader Award. We spoke with Dr. Gwynne to get an inside look at his work and understand how this may impact Lyme patients in the future. His focus is simple to state but complex to achieve: develop better diagnostics, identify meaningful biomarkers, and move the field toward treatments and even prevention strategies that could fundamentally reshape how Lyme disease is understood and managed.

Drawn to Lyme by the Urgency of the Need

Dr. Gwynne did not begin his career in Lyme disease. He trained in molecular microbiology, studying pathogens such as Salmonella and Staphylococcus, the bacteria responsible for serious infections, including those often acquired in hospital settings. But over time, he found himself seeking work that could make a tangible difference for patients.