Lyme disease Archives - Bay Area Lyme Foundation

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

By Bay Area Lyme Foundation

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.”

Tick-borne Disease Prevention for City Employees

By Bay Area Lyme Foundation

Bay Area Lyme Spotlights Series

“Tick-borne diseases are a growing public health concern in California and across the country. Educating the community and supporting prevention efforts is essential.”

– Guillermo Calvillo, Staff Specialist

For the past four years, Bay Area Lyme Foundation has partnered with the City of San Jose’s Environmental Services Division (ESD) to offer free tick-bite prevention and Lyme disease awareness training to employees whose jobs in the field place them at risk of exposure to ticks. As part of our ongoing education efforts, we spoke with Staff Specialist Guillermo Calvillo to learn more about his department’s work—and why tick-bite prevention matters to his team.

BAL: What do you do?

Calvillo: I work at the City of San Jose Environmental Services Division (ESD). I am in charge of all aspects of safety training and compliance for the entire ESD. I have been with the city for almost five years, and I have learned a great deal while enjoying being part of the ESD team.

Bay Area Lyme Foundation Announces New Executive Director Josh Wein

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Announces New Executive Director Josh Wein

Wein brings valuable life sciences and fundraising experience to advance BAL’s mission

PORTOLA VALLEY, Calif. June 18, 2025 – Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, has hired Josh Wein to serve as its new executive director, positioning the foundation for continued success funding high-quality research to improve Lyme diagnostics and treatments. Wein succeeds Linda Giampa, who has joined the Board of Directors and will bring her 12 years of experience in successfully growing the foundation’s operations to the board.

“Josh is the right leader for Bay Area Lyme Foundation as we enter this exciting new chapter,” said Bonnie Crater, founder and co-chair of the Board of Directors of Bay Area Lyme Foundation. “With his talent as a storyteller and passion for our mission, he will inspire the next significant advancements in Lyme disease medical research.”

Wein is an experienced leader with an extensive background in biotechnology and life sciences communications and a track record of helping organizations raise substantial funds. He has spent the past 10 years helping guide life science and healthcare companies including Delfi Diagnostics, Commure, and Guardant Health where he supported multiple $100 million+ financing rounds. His career started in journalism at the San Francisco Examiner, where he honed storytelling skills that will help him elevate the next phase of Lyme disease research with awareness of the challenging and misunderstood experiences of Lyme patients.

Nancy Haney’s Death: A Tragic Story of Misdiagnosis, Delayed Diagnosis, and Medical Failure

By Bay Area Lyme Foundation

Bay Area Lyme Spotlights Series

“If you have someone who’s sick and you are treating them and they’re not getting better, then either the treatment is wrong or the diagnosis is wrong.”

– David Haney, PhD

Nancy Haney was a highly respected pediatric physical therapist who developed serious health problems that were misdiagnosed over many years, leading to delays in treatment. After exhaustive efforts, it was determined that Nancy had developed an autoimmune condition—likely triggered by Lyme disease—that resulted in debilitating symptoms and complications, including a long-lasting case of shingles, which eventually led to a fatal hemorrhagic stroke. David Haney, Nancy’s husband, recounts his tireless pursuit to find Nancy appropriate care and treatment. Despite his efforts, the mainstream medical system repeatedly failed to correctly diagnose and treat Nancy’s underlying conditions, which led to a tragic and preventable outcome.

David’s story is a call to action for greater awareness, more comprehensive training for doctors, and a fundamental shift in the medical community’s approach to complex, multifaceted infection-associated chronic conditions. Nancy’s case highlights the critical need for improved awareness, diagnostic tools, and treatment approaches for complex cases involving Lyme and tick-borne diseases. Only then can we hope to prevent other families from enduring the same treatment failures as the Haney family.

Connection and Collaboration Bringing Hope: Understanding the Immune System’s Role in Post-Treatment Lyme Disease

By Bay Area Lyme Foundation

Bay Area Lyme Spotlights Series

“Philanthropy is mission-critical to advance the field of Lyme disease research.”

– Bill Robinson, MD, PhD

In this conversation, we talk with Bill Robinson, MD, PhD, the James W. Raitt professor of medicine and division chief, division of immunology and rheumatology at Stanford University, about how his work is helping us understand the immune system’s response to a Lyme infection. A long-term collaborator and grant recipient of Bay Area Lyme Foundation, Dr. Robinson reflects on his history with our organization, the plight of Lyme patients, the paucity of government funding for investigations into the disease, where Lyme disease research is now, and where he thinks it’s headed in the next 5-10 years.

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.

Pathogens and Persistence: The Chronic Disease Drivers

By Bay Area Lyme Foundation

BAL “Quick Bites” Series

“I’ve always said that the FDA has been captured by the pharmaceutical industry. They don’t have our best interests at heart. You shouldn’t be funded by the people you’re supposed to be regulating.”

– Steven Phillips, MD

Ticktective host, Dana Parish, talks with her longtime collaborator and co-author of Chronic, Dr. Steven Phillips, a Yale-trained internal medicine doctor who specializes in treating patients with complex, chronic illnesses, often driven by underlying infections like Lyme, Bartonella, Babesia, and now, COVID. In this podcast episode, Phillips discusses the importance of getting to the root cause of mystery autoimmune illnesses, rather than just suppressing symptoms. He states that many chronic infections can drive autoimmune conditions, including Lyme disease, and that Lyme tests are often inaccurate, with a sensitivity of around 50%. Phillips discusses how he recommends treating suspected tick bites to prevent the development of chronic Lyme disease and his use of a multi-antibiotic approach and pulsed antibiotic therapy to target persistent infections. He also discusses his experiences treating COVID-19, using a multi-modal approach including doxycycline, Paxlovid, Metformin, and other drugs and supplements, and the reactivation of infections like Bartonella in Long COVID patients. They also discuss how the chemical and pharmaceutical industries’ interests do not necessarily align with patients trying to get well. The interview highlights Dr. Phillips’s expertise in treating complex chronic infections and his holistic, evidence-based approach to patient care.

UCSF’s New Lyme Clinical Trials Center: Addressing the Need for Evidence-Based Treatments for Lyme & TBD Patients

By Bay Area Lyme Foundation

Bay Area Lyme Happenings Series

UCSF has joined the Cohen Foundation’s nationwide Lyme Clinical Trials Network (CTN) for Lyme and tick-borne diseases. The new Lyme Clinical Trials Center (CTC) at UCSF was funded by a $1m grant from Bay Area Lyme Foundation and is led by Charles Chiu, MD, PhD, and Felicia Chow, MD, as co-principal investigators. As the West Coast ‘node’ in the network, UCSF’s new Lyme Clinical Trials Center will focus on interventional trials and diagnostic studies to improve diagnosis and treatment of Lyme disease.

In this presentation to patients with Lyme disease in Marin County just north of San Francisco, Dr. Chow explains how the CTC allows for a more diverse patient population to participate in Lyme clinical trials, which is critical for developing therapies that can help a wider range of patients. UCSF’s involvement also aims to help Bay Area Lyme raise awareness that Lyme disease is prevalent year-round in almost all California counties.

Dr. Chow discusses an upcoming trial at UCSF that will evaluate the use of transcranial direct current stimulation (tDCS) to improve cognitive symptoms in patients with chronic Lyme disease. Additionally, UCSF researchers are exploring the use of metagenomic sequencing and machine learning to develop more accurate diagnostic tests for Lyme and other tick-borne infections.

Note: This transcript of Dr. Chow’s presentation has been edited for length and clarity.

“I hope that through these clinical trials, we’ll be able to identify therapies that are helpful to patients and that, as a result, have an impact on clinically meaningful outcomes—from day-to-day function, quality of life, and all of those important measures that indicate that a treatment is successful.”

– Felicia Chow, MD

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.