Lyme Stories 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.”

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.”

A Foot-Tapper and Smile-Creator! Lyme Patient Releases New Jazz Album

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight Series

“Every listen helps fund Lyme research.”

– Steve Ehrlich

Steve Ehrlich emigrated to the San Francisco Bay Area from South Africa in 1989. Chronic Lyme Disease cut short his career in the software industry, and he turned to writing music. He has released two contemporary jazz albums with his virtual band, The Inter Section. He spends his days on his sofa writing music with his doggie, Frankie, hitting play and paws when needed. The second jazz album is now available on all the streaming apps, and, like his first album, all the proceeds will be donated to Bay Area Lyme.

We Need a New Generation of Lyme Doctors: James Bruzzese, MD, is Leading the Way

By Bay Area Lyme Foundation

Bay Area Lyme Spotlights Series

“Some institutions are evolving in research and education, but it’s not translating to clinical practice.”

– James Bruzzese, MD

When James Bruzzese, MD, talks about Lyme disease, he doesn’t speak in abstractions. He speaks as a brother who watched his sister lose her ability to walk; a son who watched his father leave his job to become a full-time caregiver; and as a medical student who sat in lecture halls knowing that what was being taught about Lyme and tick-borne disease was grossly incomplete.

Now, as a young physician preparing to open a practice dedicated to treating Lyme and tick-borne disease patients in New York, James represents something the Lyme community urgently needs: a new generation of doctors who understand that Lyme is real, that patients deserve better, and that the status quo must be challenged.

“It Was Traumatic. We Thought We Might Lose Her.”

Dr. Casey Kelley: From Lyme & Mold to Optimum Health

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight Series

Click here to watch or listen now

In a powerful Ticktective™ episode, host Dana Parish sits down with Casey Kelley, MD, Founder and Medical Director of Case Integrative Health, to unpack the complex world of Lyme disease, mold toxicity, environmental illness, and whole-body healing. Dr. Kelley had her own health journey with chronic fatigue, POTS, and other symptoms that led her to specialize in Lyme, tick-borne diseases, mold illness, long COVID, and other complex chronic illnesses. She brings clarity, compassion, and years of integrative and functional medicine experience to help patients understand what’s driving persistent symptoms and what true recovery can look like.

“The nervous system is utterly important to healing. And that entire system gets really thrown off with chronic infections exactly the same way that trauma with a capital T will cause dysfunction in the system.”

– Casey Kelley, MD

Progress from Partnership: Reflections from the Frontlines

By Bay Area Lyme Foundation

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

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.

Dr. Scott Commins, Alpha-Gal Syndrome, and a Guide to Tick-Induced Meat Allergies

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

Ticktective™ host Dana Parish interviews Scott P. Commins, MD, PhD, about the growing prevalence of alpha-gal syndrome, a food allergy condition caused by a tick bite, where people develop an allergic reaction to a sugar found in red meat and other mammalian products. Symptoms can include hives, gastrointestinal distress, and potentially life-threatening anaphylaxis, often occurring 3–6 hours after consuming specific foods. This syndrome is increasing, especially in the Southeastern United States, due to the spread of the Lone Star tick. Dr. Commins discusses the current state of research in the US and how investigators are working to develop immunotherapy approaches to help desensitize patients and potentially resolve the allergy over time.

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 host, Dana Parish, and I’m the co-author of the book Chronic, and I sit on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with scientists, clinicians, patients, and other interesting people. We’re a nonprofit 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 prevention programs. For more information about Lyme disease, please visit us at bayarealyme.org.

Today, I welcome Dr. Scott Commins. He is a highly esteemed expert in the field of allergy and immunology at the University of North Carolina (UNC) and a pioneer when it comes to alpha-gal syndrome. You’ve heard about alpha-gal when a tick bite can cause a meat allergy, but there is so much more to know. So enjoy this interview. I hope you learn a lot and please share it with your doctors because there is such a lack of education about this very important syndrome, and doctors becoming aware of it will only help us patients.

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

By Bay Area Lyme Foundation

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.

Lyme Patient Releases Smooth Jazz Album: Easing the Pain with Approachable Melodies

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight Series

“My goal was to create happy, melodic, and approachable music that everyone in the Lyme community can enjoy during infusions, when they are feeling down, or just need a distraction of their own.”

– Steve Ehrlich, Lyme patient

Steve Ehrlich emigrated to the Bay Area from South Africa in 1989. Chronic Lyme Disease cut his career in the software industry short, and he turned to writing music. His virtual band, The Inter Section, released its debut album, Jazz and All That, in November 2024. He spends his days on his sofa writing music with his dog, Teddy, making sure the notes are correct.

The Numbers Don’t Lie: Why the NIH Consistently Underfunds Research into Lyme Disease

By Bay Area Lyme Foundation

An In-depth Interview with Kris Newby, Author of “Bitten”

“We need to let the NIH know that we’re watching them, and we want results.”

– Kris Newby

Kris Newby, author of ‘Bitten,’ is investigating government spending on Lyme disease research, which is strongly influenced by the flawed original disease definition of Lyme disease. She summarizes the impact of the 2018 Tick-Borne Disease Working Group’s report, explains where research funding has and is currently being directed, and calls for money to be spent on better diagnostics and treatments for Lyme disease sufferers instead. Kris explores potential actions that Lyme patients can take to help direct the course of funding, such as communicating with Congress, supporting advocacy groups, and donating to research organizations.

The views and opinions expressed in this article are those of the interviewee and do not necessarily reflect the views or positions of Bay Area Lyme Foundation.

Kris Newby is watching our government, and watching quite closely. She has a lot to say about how government money is spent on a disease that, according to CDC estimates, infects almost 500,000 people annually in the US, causing untold pain, suffering, loss of livelihood, and, in extreme cases, severe mental illness, including suicidal and homicidal events.

Of course, we are talking about Lyme disease—the pariah of infection-associated chronic conditions.