Lyme disease biobank Archives - Page 2 of 4

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.”

Bay Area Lyme Foundation Announces National Winner of the 2025 Emerging Leader Award to Develop a Much-Needed Rapid, Low-Cost, Easy-to-Use Lyme Disease Test

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Announces National Winner of the 2025 Emerging Leader Award to Develop a Much-Needed Rapid, Low-Cost, Easy-to-Use Lyme Disease Test

Winner Chao Wang of Arizona State University will receive $150,000 to evaluate a unique diagnostic that uses gold nanoparticles and has been proven in other infectious diseases

PORTOLA VALLEY, Calif., June 12, 2025—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, has given its 2025 Emerging Leader Award (ELA) to Chao Wang, PhD, associate professor in the School of Electrical, Computer and Energy Engineering at Arizona State University, faculty with ASU’s Biodesign Institute® and an expert in nanotechnology and biosensors. Wang will receive $150,000 to support his work to develop a much-needed rapid, low-cost, easy-to-use test, called Nano2RED-LD, for Lyme disease. The test aims to deliver results in as few as 30 minutes when a patient who may have Lyme disease first sees a doctor.

There is an immense need for better Lyme disease tests. Today’s standard-of-care tests miss too many cases at all stages of Lyme disease, including as many as 70% of early Lyme cases.

“With Lyme disease cases rising steadily across the U.S., the need for accurate and timely diagnostic tools has never been greater,” said Katariina Tuovinen, research grant director, Bay Area Lyme Foundation. “Dr. Wang’s pioneering work epitomizes the essence of this award as it applies innovation from other infectious diseases in an effort to enhance outcomes for patients affected by Lyme disease.”

Unlocking the Mysteries of Tick-borne Infections: Lyme Disease Biobank’s Tissue Collection Program Drives Research Momentum

Kirsten Stein and the Lyme Disease Biobank

By Bay Area Lyme Foundation

BAL Leading the Way Series

“My family knows that after I die, my tissues will be donated to Lyme Disease Biobank to provide researchers with the vital material they need to solve this horrible disease. I urge anyone with chronic/persistent Lyme to register with NDRI today. Let’s end this suffering together.”

-Kirsten Stein, Lyme Advocate

Lyme Disease Biobank^®, led by Liz Horn, PhD, MBI, is central to Bay Area Lyme Foundation’s 10-year search for answers to Lyme’s most intractable questions and is the most important program in the Foundation’s mission to make Lyme disease easy to diagnose and simple to cure.

The original Lyme Disease Biobank sample collection launched in 2014 focused on obtaining blood, urine, and serum samples from patients with early/acute Lyme disease. Once this program had been fully established, the Lyme Disease Biobank team explored adding tissue samples to the Biobank. Tissue samples could help researchers expand their investigations beyond the early stage of infection into how chronic/persistent Lyme and other tick-borne diseases impact the central nervous system, joints, and organs of Lyme patients.

With the tissue bank objectives defined, the Biobank connected with specialist organizations to provide the critical support needed to support sample collection and make the development of a tissue bank a reality.

Post-Mortem Tissue Collection Planning

Lyme Disease Biobank established a key partnership with the nonprofit National Disease Research Interchange (NDRI) to provide logistics for post-mortem tissue collection for the new tissue program. The Biobank also partnered with MyLymeData.org, allowing Lyme patients registered with the Biobank to link their MyLymeData profile to their tissue donation if desired. Bringing these two resources together provides for the organizing and recovery of post-mortem (after death) tissue. It ensures samples include redacted (removes identifying information) detailed patient medical histories—an important nuance for Lyme disease researchers.

“Although it is an emotional and difficult idea for anyone to plan to donate parts of their body to science after they have died, we believe that this decision is an important way for Lyme patients to change the course of Lyme disease research. Having access to tissues from the brain, heart, joints, and central nervous system of Lyme patients allows researchers to prove unequivocally that Lyme is present in tissue and contributes to patient suffering,” explains Linda Giampa, Executive Director, Bay Area Lyme Foundation and board member of Lyme Disease Biobank.

The Myth of the Bullseye: Why Recognizing the Spectrum of Lyme Disease Rashes is Critical for Diagnosis and Treatment

By Bay Area Lyme Foundation

BAL Spotlights Series

Anna Schotthoefer, PhD, a project scientist at Marshfield Clinic Research Institute in Wisconsin, discusses the collection and analysis of a specific subset of blood and urine samples for Lyme Disease Biobank—a Bay Area Lyme Foundation program—from patients diagnosed with tick-borne diseases in the state. Marshfield Clinic serves a large population in Wisconsin and Michigan’s Upper Peninsula, which are highly endemic for Lyme disease. Her Bay Area Lyme-funded study of the Marshfield samples focused on visual documentation of rashes associated with Lyme disease and the challenges in accurately diagnosing the disease based on these rashes. The results highlight the difficulties in recognizing early Lyme: only two of 69 patients presented with the classic bullseye rash that doctors learn is the gold standard for diagnosing Lyme from textbooks. Schotthoefer discusses the variety of different rashes that can result from a tick bite, the characterization of the spectrum of rashes, the need for better Lyme diagnostics, and the ongoing efforts to develop new testing methods using the samples collected in LDB. She expresses optimism that in the next five to ten years, there will be significant advancements in Lyme disease detection, diagnosis, and therapeutics—largely thanks to patients who have contributed samples to LDB for ongoing research.

“The textbooks doctors read in medical school tell them, ‘Look for a bullseye rash; look for the target-like lesion,’ and it turns out that’s wrong. There is a need to continue educating clinicians and providers that Lyme rashes are a spectrum.”

– Anna Schotthoefer, PhD

Dr. Liz Horn Explains How Lyme Disease Biobank Samples are Foundational to the LymeX Diagnostics Prize

By Bay Area Lyme Foundation

BAL Spotlight Series

In this interview, the LymeX Diagnostic Prize talked with Liz Horn, PhD, MBI, Principal Investigator for Bay Area Lyme Foundation’s Lyme Disease Biobank (LDB), about her work in Lyme disease, the challenges researchers face, how the LymeX Diagnostics Prize could help further our understanding of the disease and how Lyme patient samples from our biobank are critical to the competition’s success.

This interview has been edited from the original.

“What’s exciting about the LymeX Diagnostics Prize is that you have a lot of different people with good ideas and different teams with a lot of different technologies trying to solve this problem.”

– Liz Horn, PhD, MBI

The LymeX Diagnostics Prize is a multiphase competition funded by the US Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation to accelerate the development of Lyme disease diagnostics. Through October 2023, the 10 teams selected to be part of Phase 2 of the LymeX Diagnostics Prize are participating in a virtual accelerator designed to help them refine their concepts for detecting active Lyme disease infections in people. As the Phase 2 accelerator cohort continues to develop their diagnostics, the teams have access to scientific advisors who provide valuable insight and feedback from their extensive experience in Lyme disease diagnostics, one of whom is Dr. Horn. The Phase 2 cohort also has access to the blood and urine samples donated to LDB by Lyme patients.

A cancer biologist by training, Dr. Horn has spent her career working with nonprofit research organizations to help build research programs, registries, and biorepositories. She joined Bay Area Lyme Foundation in 2013 to lead the creation of a Lyme disease biorepository. As a scientific advisor for the LymeX Diagnostics Prize, Dr. Horn is mentoring participating teams through office hours and webinars.

LymeX: As the principal investigator for the Bay Area Lyme Foundation’s Lyme Disease Biobank, you have extensive experience in Lyme disease research. How did you first start working in the field, and what are you focusing on now with the biorepository?

Foundational Work Scores Results

By Bay Area Lyme Foundation

BAL 10-year Anniversary Series

10 Years of Collaboration Bringing Hope: How Dr. John Aucott’s Relationship with Bay Area Lyme Helped Get Groundbreaking Biobanks Launched to Fuel the Research Engine of Lyme Disease Investigations

In this blog, part of our 10-year anniversary blog series, we talk with John Aucott, MD, Associate Professor of Medicine at Johns Hopkins University, Director of the Lyme Disease Research Center, about his work and how his investigations are helping us understand persistent/chronic Lyme infections. A long-term collaborator and grant recipient of Bay Area Lyme Foundation, Dr. Aucott reflects on his history with our organization, the ongoing plight of Lyme disease patients, and the slow growth in government funding for investigations into the disease. He talks about the early days of identifying the need for well-characterized samples from Lyme patients and his role in helping launch biobank programs, including his own SLICE Study Biorepository and BAL’s Lyme Disease Biobank.

Bay Area Lyme: I want to take you right back to the very beginning of your relationship with Bay Area Lyme (BAL), the founding of your SLICE study and our Lyme Disease Biobank (LDB) and talk about everything that was happening 10 years ago. People talk about the “norming, storming and forming” stages of organizations, and there was an awful lot of activity going on 10 years ago in the world of Lyme disease. And so, please share your thoughts on what was happening around that time, your part in it, and how you came into the picture with BAL and our biobank.

SLICE Studies — The Study of Lyme disease Immunology and Clinical Events (SLICE), Johns Hopkins University Lyme Disease Research Center

John Aucott: My first memory is that I flew out to California and my agenda at that time was getting people interested in research. There was very little funding for Lyme disease research, and to some extent there still isn’t a great amount of funding for Lyme disease, especially the kind of research I do, which is clinical translational research. I’m an MD, so my research involves bridging basic science to human beings to patients. So, to be very candid about it, I was interested in getting BAL interested in my work. I pitched what we were doing. We had already set up the Johns Hopkins SLICE study, the Study of Lyme disease Immunology and Clinical Events. And at that point it was one of only two large scale biobanks collecting for Lyme disease. The other one is Dr. Gary Wormser’s, who still has a biobank in Valhalla, New York.

So, I was pitching the idea of a Lyme disease biobank to BAL, and this was a whole new concept. A biobank is a hard concept to sell initially because people don’t understand that setting up a biobank is like being Levi Strauss: It’s selling the Levis and the picks, and the shovels—not selling them the actual gold in your pocket. And it’s a hard pitch because people don’t understand that somebody has to supply the foundational work so that other people can mine for the gold. But BAL caught on to the idea that the biobank that we had at Hopkins was a crucial resource that would enable collaboration with other researchers to advance the scientific understanding of disease mechanisms and potentially identify and validate biomarkers for improving diagnostics and treatments.

LymeAid 2013 — LymeAid 2014 Scientific Panel (from left): Wendy Adams, John Aucott, MD, Carin Rollins, and Bill Robinson, MD, PhD

Bay Area Lyme bought into the importance of this idea. The first thing that happened was you asked me to be on the BAL Scientific Advisory Board soon thereafter. BAL expressed support for the SLICE study’s biobank at Hopkins and you actually gave us one of our first grants to help support our biobank work. So, that was the first thing that happened. We applied for a grant, and we got a grant from BAL to help us because we had not yet gotten federal funding for it. So, that was one of the first grants to support it, and now in 2023 we are finally receiving our first NIH funding.

The Long and Winding Road: The Story of Bay Area Lyme’s Multi-Year Quest to Identify Treatments for Lyme Patients

By Bay Area Lyme Foundation

BAL Leading the Way Series

“The opening of a network of Lyme disease clinics is the culmination of many years of tireless work and the vision of a small group of determined women over 10 years ago. We are extremely optimistic that the Lyme Clinical Trials Network will accelerate the development of new treatments for patients with post-treatment and persistent Lyme disease.”

—Linda Giampa, Executive Director, Bay Area Lyme Foundation

When Bay Area Lyme Foundation (BAL) was formed a decade ago, its mission was clear: to make Lyme disease easy to diagnose and simple to cure. “And that’s still our goal,” emphasizes BAL co-founder Bonnie Crater, as she reflects on the last 10 years. However, appreciating the magnitude of the Foundation’s audacious mission requires an understanding of two complex—yet inextricably linked—medical domains: the world of diagnostics, and the world of therapeutics.

Bay Area Lyme Co-Founder Bonnie Crater

The ‘Holy Grail’ for Lyme disease is an accurate diagnostic test—or better yet a suite of specifically designed tests for the different stages of acute and persistent Lyme disease. Although great strides are being made in understanding the infection and the disease’s progression, the ‘silver bullet’ of accurate diagnostic tests continues to elude us. The current diagnostics for acute Lyme (a two-step process with an ELISA either followed by a Western blot or another ELISA) are fraught with problems. These tests may miss up to 70% of acute Lyme cases or deliver false negative results. They are unreliable for detecting acute Lyme and are ineffective indicators for anyone with a persistent/chronic tick-borne infection. (Watch or listen to our Ticktective with Brandon Jutras, PhD, to learn why the current direct detection tests for Lyme are so inaccurate.)

Add to this the fact that FDA-approved therapeutics—or ‘cures’—have not evolved much in 10 years either and foment controversy. A quick internet search on ‘How to treat Lyme disease’ will offer information from the IDSA (Infectious Diseases Society of America) stating that a 10-14-day course of oral antibiotics, such as amoxicillin or doxycycline, will do the job for someone with an EM (Erythema migrans) rash who has early/acute Lyme. But anyone who has had Lyme disease, been treated, and then experienced a continuation of symptoms knows that this recommended course of intervention often fails to clear the infection, leaving some persistent Lyme patients in limbo, and health care providers without an approved treatment protocol. Simply put, this is the continuing underlying treacherous terrain of Lyme, throwing up challenges in both diagnostics and therapeutics.

Bay Area Lyme Foundation Celebrates Department of Defense CDMRP Tick-borne Disease Awardees

By Bay Area Lyme Foundation

Bay Area Lyme Foundation Celebrates Department of Defense CDMRP Tick-borne Disease Awardees

Projects of three awardees to be enabled by Lyme Disease Biobank samples

PORTOLA VALLEY, Calif., March 23, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces that two projects it has previously funded have now received Department of Defense Congressionally Directed Medical Research Programs (CDMRP) Tick-Borne Disease awards. Three of the six recently announced CDMRP awardees will be using biological samples from Bay Area Lyme Foundation’s Lyme Disease Biobank to enable their research into diagnostics and therapeutics for tick-borne diseases, including Lyme disease—which infects half a million people each year.

“Government awards like CDMRP help propel much needed research on tick-borne illnesses forward, and, with three diagnostics projects using Biobank samples, we are honored to play a part in making this important research possible,” said Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank, which provides researchers with access to reliable biological samples to enable research toward better diagnostics and treatments for these complex diseases. “If researchers don’t have access to well-characterized blood samples with robust testing and medical information, they can’t build the necessary research programs to develop better diagnostics, which are urgently needed for these complex diseases,” added Dr. Horn.

One Lyme Patient’s Challenging Quest to Donate Her Body to Science in Her Final Days

By Bay Area Lyme Foundation

BAL Spotlight Series

In Puerto Rico, Donating Your Body to Science is Almost Impossible

Luisette Mauras Rodriguez working in the lab at Cornell — Working in the lab at Cornell in 1997

Luisette Mauras Rodriguez is lying in bed at home in Guyana, Puerto Rico, waiting to die. She’s 46 years old, her body ravaged by Lyme, numerous tick-borne coinfections, and a multitude of other hits caused by environmental exposure to toxins like black mold, fungus, mycoplasma, and chikungunya virus. Family members do not understand her illness and laugh at her ‘exaggerations.’ Her husband left her because he fears getting sick and his religious convictions cause him to question the validity of her condition. Her mother, formerly a registered nurse, has abandoned her to her fate. Whenever Luisette gets desperate for help and goes to the ER, they refer her to the psych ward saying her illness is fabricated.

Cornell University and the surrounding woods where she was bitten

A former professional lab technician who worked in pharmaceutical development with US companies like Wyeth, SmithKline Beecham, and IPR Pharmaceuticals, Luisette has one dying wish: to donate her body to the Lyme Disease Biobank (LDB) so that samples from her brain, joints, organs, and tissues will be used to fuel much-needed research into Lyme and tick-borne diseases. She has registered with the National Disease Research Interchange (NDRI) in Philadelphia to have her body collected after her death, but as of writing this article, staff there are unable to find any medical professional on the island willing to partner with them to ensure this happens.

“We have been unsuccessful in securing anyone for recovery for the donor located in Puerto Rico. It has been very difficult getting anyone to follow up with us on top of the language barrier. We were trying to give the pathology department at the University time to get back to us but they seem to be very busy. The complexity of the recovery also makes it more difficult as well.” — Wauchita Green, Manager, Organ & Tissue Source Sites, NDRI, The National Disease Research Interchange

Bay Area Lyme Foundation Researcher Validates New Approach to Overcome Challenges of Lyme Disease Diagnosis in the Lab

Artem Rogovskyy, PhD, DVM, receiving the ELA award at LymeAid

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Bay Area Lyme Foundation Researcher Validates New Approach to Overcome Challenges of Lyme Disease Diagnosis in the Lab

Using samples from the Lyme Disease Biobank, Raman spectroscopy is identified as a potentially more sensitive test for diagnosing Lyme disease

Portola Valley, CA, February 9, 2023 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of a laboratory study published in the peer-reviewed journal Frontiers in Cellular and Infection Microbiology that identifies Raman spectroscopy as a promising diagnostic approach for Lyme disease, a condition that affects nearly 500,000 new patients annually. Conducted by one of Bay Area Lyme Foundation’s Emerging Leader Award winners, Artem Rogovskyy, PhD, DVM, along with researchers from Texas A&M University, the study identified Borrelia infection with 88% accuracy, 85% sensitivity, and 90% specificity using Raman spectroscopy, a light-based test commonly used in chemistry labs, to evaluate human blood samples provided by Bay Area Lyme Foundation’s Lyme Disease Biobank.

“By identifying a unique spectrum fingerprint to detect Lyme borreliosis faster, Raman spectroscopy has the potential to diagnose the disease earlier,” said Dr. Rogovskyy, associate professor of Veterinary Pathobiology at the School of Veterinary Medicine and Biomedical Sciences at Texas A&M University. “We hope that developing an effective, robust, and rapid diagnostic test will help overcome current challenges in Lyme disease diagnosis.”

The study aims to address the immediate need for more sensitive diagnostics in Lyme disease as the current gold standard diagnostic has been shown to be insensitive in up to 60% of early-stage patients and up to 30% of late-stage patients.

“The lack of an accurate diagnostic test is not only a challenge for clinicians trying to properly diagnose and treat patients, but also makes clinical trials for new treatments difficult,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “Our hope is that new approaches like this one will allow for early detection and treatment of all patients with Lyme disease.”