Lyme diagnostics Archives - Bay Area Lyme Foundation

Bay Area Lyme Foundation Statement on the HHS Lyme Disease Roundtable

By Bay Area Lyme Foundation

The December 15, 2025, HHS roundtable on Lyme disease and other tick-borne diseases placed long-overdue national attention on the millions of patients and families who have lived with an “invisible illness” for far too long. One of the clearest messages of the event was that the era of dismissing or gaslighting Lyme patients must end. This reflects what our community has endured for years.

Secretary Kennedy Convenes Lyme Disease Patients and Providers to Announce New Diagnostic Efforts

The Bay Area Lyme Foundation welcomes this federal focus on the urgent need for accurate diagnostics, rigorous patient-centered research, and better access to care, including the acknowledgment that Lyme disease qualifies as a chronic condition within Medicare care frameworks. These priorities closely align with, and have long guided, the work we have led for more than a decade.

We initiated the Lyme Disease Biobank, which is now a cornerstone resource for diagnostic and translational research across the country and has attracted significant support from the Steven and Alexandra Cohen Foundation. Through additional philanthropic investment and scientific collaboration, Bay Area Lyme has also supported or co-funded many of the research advances referenced throughout the roundtable.

ELA Winner Mikki Tal — Dr Tal accepting the 2018 Emerging Leader Award at LymeAid

We were also proud to see several members of our scientific community participate in the discussion. Dr. Steven Phillips, a long-standing member of the Bay Area Lyme Scientific Advisory Board, spoke directly to the burden of persistent Lyme and emphasized the need for better diagnostics and more effective treatments. Dr. Linden Hu, also a member of our Scientific Advisory Board, highlighted important advances in multi-omic research, drug repurposing, and machine learning. Dr. Robert Bransfield twice mentioned his work with the Lyme Disease Biobank, a program of the Bay Area Lyme Foundation, and its importance to research. In addition, researcher Dr. Mikki Tal (an Emerging Leader Award research recipient) has contributed to the growing body of evidence that is reshaping how persistent infection and immune dysregulation are understood.

As federal agencies, lawmakers from both parties, and partner foundations consider next steps, Bay Area Lyme Foundation stands ready to collaborate. Our focus remains clear:

Make Lyme and other tick-borne diseases easy to diagnose and simple to cure
Accelerate the development of reliable diagnostics
Support well-designed clinical trials, including repurposed therapeutics
Expand prevention, education, and scientific understanding across the United States

National attention is encouraging, and we welcome the engagement of the public sector, but progress will continue to depend on rigorous science, transparent evidence, and solutions centered on patients. Our commitment is to ensure that this moment leads to real and measurable change for the millions affected.

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

By Bay Area Lyme Foundation

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

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.

Journal of Clinical Microbiology Studies Demonstrate Two Investigational Diagnostics Outperform Current Tests in Detecting Early Lyme Disease

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Journal of Clinical Microbiology Studies Demonstrate Two Investigational Diagnostics Outperform Current Tests in Detecting Early Lyme Disease

Studies utilize Bay Area Lyme Foundation’s Lyme Disease Biobank samples to point to the promise of single-tier diagnostics to potentially transform early detection

PORTOLA VALLEY, Calif., October 9, 2025 — Bay Area Lyme Foundation, the leading nonprofit funder of Lyme disease research in the US, today announced results from two independent studies published in Journal of Clinical Microbiology, conducted by researchers at Tufts University School of Medicine, and Kephera Diagnostics, respectively, demonstrating the potential of novel investigational single-tier Lyme disease tests to improve accuracy in the earliest stages of infection. Each study uses well-characterized samples from Bay Area Lyme Foundation’s Lyme Disease Biobank and demonstrated unprecedented accuracy, far exceeding the current CDC-recommended Lyme disease two-tier test, which can miss up to 70% of early-stage cases as well as later-stage cases.

“The CDC’s standard two-tier Lyme diagnostic misses the majority of early cases, delaying treatment and increasing the risk of developing persistent, debilitating symptoms for patients. The two novel single-tier assays—while not yet FDA-cleared for clinical use—point to a future where Lyme disease can be diagnosed quickly, accurately, and with a single test,” Liz Horn, PhD, MBI, a coauthor on both studies, and Principal Investigator of Lyme Disease Biobank, a Bay Area Lyme Foundation program that provides much-needed samples to approved researchers working to better understand tick-borne diseases and develop improved diagnostic tests and therapeutics. “These single tier tests, like InBios Lyme Detect™ and Kephera’s Hybrid Lyme ELISA could mark a turning point for Lyme diagnostics, giving physicians and patients more accurate tools that are urgently needed.”

The first study, evaluating the InBios Lyme Detect™ Multiplex ELISA, was conducted by Pete Gwynne, PhD, a 2022 Bay Area Lyme Emerging Leader Award (ELA) winner, and colleagues at Tufts University School of Medicine. Using samples from the Lyme Disease Biobank, this new diagnostic correctly identified all two-tier positive samples evaluated in the study, while also detecting 21 of 79 clinically diagnosed patients who were missed by following the current CDC guidance for testing using FDA-cleared standard two-tier tests (STTT) and had erythema migrans (EM) skin lesions. Importantly, the InBios test maintained >99% specificity, with only one false positive across more than 200 control and lookalike disease samples and was shown to be highly reproducible.

Dr. Joe Burrascano: A Masterclass on Tick-Borne Illness

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

In this episode of Ticktective™, host Dana Parish interviews Joe Burrascano, MD. Dr. Burrascano is a pioneer in the field of Lyme disease, having treated patients since the early days of the illness in the 1980s and 1990s. He co-founded the International Lyme and Associated Diseases Society (ILADS) to help train clinicians in treating Lyme and associated tick-borne diseases. Dr. Burrascano discusses the challenges in diagnosing and treating Lyme, including issues with the limited testing criteria and the chronic, multisystemic nature of the disease. He outlines his approach to treating early Lyme with a “hybrid” antibiotic regimen, as well as the use of pulsed and cycling antibiotic therapies for chronic cases. He also highlights the importance of addressing underlying health factors like immune dysfunction, toxin buildup, and co-infections like Bartonella and mold toxicity in chronic Lyme patients. Dr. Burrascano emphasizes the need for a holistic, patient-centered approach to managing complex, persistent tick-borne illnesses.

“If you have something that’s every part of your body is bothering you, and it comes and goes and it moves around, of course, you’re going to be labeled as a little bit cuckoo. It’s not. It’s Lyme disease.”

– Joe Burrascano, MD

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@bayarealyme.org.

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

By Bay Area Lyme Foundation

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.

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.

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.

Understanding Infection-associated Chronic Illness: How the Immune System Responds to Persistent Infection

Distinguished Speaker Series with Michal Tal, PhD

By Bay Area Lyme Foundation

Distinguished Speaker Series Transcript

“I want to leave you with hope. I think we’re going to be unstoppable because I think that these are solvable problems. These are answerable questions. I think that there are already a lot of existing tools in immunology that just need to be brought into the fight, and we can change this.”

– Michal Caspi Tal, PhD

Michal Caspi Tal: In the chronic illness world, I think that there is something about hope with a capital ‘H’ that is precious. I think it always has to be. I want to talk a little bit about what my lab is doing, where I think we could go in the future and the hope that I have for how we move forward, how we solve this, and how we change this for those who come after us. So, I’ll tell you a little bit about some of the recent things that have come out of the lab, what the lab is working on now, and where we want to go.

New Study Shows How Borrelia burgdorferi Evades the Immune System

Recently, we published a study in collaboration with Hanna Ollila’s lab where we compared people who’ve had Lyme and have had a diagnosis of Lyme versus people who’ve never had a diagnosis of Lyme. We found a genetic difference in a sweat protein that nobody—including me—had ever thought about before. We tested it against the bacteria in our lab, and we saw that it had a huge effect; we tested it in mice, and it had a huge effect. So that’s really exciting. We had another paper that came online yesterday that is one of these last papers from my postdoctoral work over at Stanford, where we actually managed to figure out some of how Borrelia burgdorferi, the bacteria that causes Lyme, manages to evade immune clearance.

Any respectable pathogen that can establish a persistent infection needs to figure out your immune system to the point that it can evade it. The fact that it has persisted means that it was able to evade your immune clearance. And so, I got to that from a very interesting direction working on immune regulation, trying to understand these brakes on the immune response and how they impact the response to infection. The immune system has the power to kill you and obviously, nobody has any incentive for that to happen. So, there are a lot of mechanisms in place to put brakes on the immune system and reign it in. One of the huge developments in cancer over the last two decades has been reevaluating the question: can we take those brakes off? So in my postdoc, I was studying a particular checkpoint where this was turning into an exciting immuno-oncology target, and I said, ‘I want to look at how this checkpoint is used in infection.’ I realized that this checkpoint was being used to help you survive an acute infection, but created a vulnerability for pathogens to evade immune clearance and establish chronic infection much like it allows cancer cells to evade immune clearance. In an amazing collaboration with Irv Weissman, Balyn Zaro, and Jenifer Coburn we realized that the bacteria that cause Lyme disease manipulate this brake and that’s how I became fascinated with Lyme. But I also became concerned about turning off this brake in cancer patients because I was concerned about what would happen if you used this on cancer patients during an active infection. Indeed, the clinical trials on this drug were ended due to increased death from infection, and I wish it hadn’t been tested during a worldwide pandemic.

Young Hearts, Hidden Battles: A pediatric infectious disease physician’s perspective on Lyme disease and neuropsychiatric manifestations

By Bay Area Lyme Foundation

Distinguished Speaker Series Transcript

“Everything about this disease is infinitely more complex and nuanced than is taught to physicians.”

– Charlotte Mao, MD MPH

Charlotte Mao: Thank you Dana for that amazing introduction and Brandi too. I want to thank Brandi for so generously opening up your beautiful home for this event and Bay Area Lyme Foundation for inviting me to speak tonight about my personal perspectives as a pediatric infectious disease physician about Lyme disease in children, particularly neuropsychiatric manifestations.

When Brandi asked if I might give a talk for this Speaker Series, I suggested this topic because, first, I hope there might be something instructive in some of my personal musings on key lessons I’ve learned about Lyme disease in the course of caring for children with this contested disease. Second, I want to highlight neuropsychiatric manifestations because I feel they generally are the least recognized by physicians as being potential manifestations of Lyme disease. Yet, taking into account all levels of severity, they are, in my view, actually quite common—certainly not uncommon—and when severe, they are among the most devastating of Lyme manifestations to the lives of children and their families.

If Pain Had a Sound: The Hunt for Relief is Riddled with Hope and Madness

By Bay Area Lyme Foundation

Written by: Katie Liljedahl, Lyme patient

BAL Spotlights Series

Katie’s journey with Lyme disease, as recounted three years ago, highlights the ongoing challenges faced by those affected by this debilitating illness. Despite her perseverance and a wonderful support system, Katie continues to grapple with intermittent flares. However, amidst these struggles, Katie has found a new home and a new love, demonstrating resilience in the face of adversity. Her story serves as a poignant reminder of the urgent need to improve Lyme disease diagnosis and treatment, ensuring that others do not endure similar hardships. By amplifying voices like Katie’s, we strive together towards a future where Lyme disease is easy to diagnose and simple to cure, allowing individuals to reclaim their lives and pursue their passions without the burden of infection-associated chronic illness.

Spine strangled, muscles on fire, bones buzzing
I will migrate within you
I am relentless
My address is your body
This is the kind of pain that rages silently in
the caverns of marrow and suffocates hope.
It gyrates and bangs clamors and rattles
A parasite upon the soul~
it drowns out the voice of God.

– Katie’s journal; August 16, 2012