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 the need for greater follow-up from medical professionals to address potential treatment failures.

PORTOLA VALLEY, Calif., July 10, 2025 (GLOBE NEWSWIRE) -- 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.”

Only 34% (43 of 128) of patients who presented with a Lyme rash larger than 5 centimeters, considered diagnostic for Lyme disease, tested positive using the CDC’s standard two-tiered test at enrollment. The study also confirmed the lack of IgG seroconversion, the development of an IgG antibody response, after antibiotic treatment. Only 4% of patient samples (10 of 233) who had a negative IgG immunoblot at the first draw had a positive IgG immunoblot at the second blood draw three months later. At this time, 21% (47 of 226) of patients who initially received antibiotics reported ongoing symptoms.

While the study does not address why only one-third (35%) of these participants followed up with their healthcare providers about their ongoing symptoms, barriers to care have been well documented in other studies. Specifically, data from MyLymeData, the largest Lyme disease patient registry documented barriers specific to patients with persistent Lyme disease, including lack of insurance coverage, healthcare costs, travel time and distance to obtain care, and availability of care.

Participants in this study provided samples to the Lyme Disease Biobank, which collects early and persistent Lyme disease patient samples, post-mortem and surgical tissue, as well as controls. This study specifically focused on patients with signs and symptoms of early Lyme disease from collection sites on Long Island, NY, and in Central Wisconsin, two areas endemic for Lyme disease. From 2014-2023, 253 participants provided samples from an initial and a second, convalescent blood draw that were evaluated by the CDC’s standard two-tiered Lyme diagnostic and answered questions about their symptoms at both timepoints.

“The Lyme Disease Biobank was visionary in recognizing early on that progress in research was dependent upon having a large number of well-characterized samples from patients with diverse manifestations of Lyme disease available for study," said Linden Hu, MD, professor of Immunology at Tufts Medical School, who collaborates with Lyme Disease Biobank. “Many research groups, including my own, have greatly benefitted from Lyme Disease Biobank samples, and studies of this size and magnitude would not have been possible without its existence.”

About Lyme disease
The most common vector-borne infectious disease in the US, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets, and can be potentially passed from a pregnant mother to her unborn baby. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and inaccurate diagnostic tests. There are more than 620,000 new cases of Lyme disease each year, according to Bay Area Lyme Foundation estimates. As a result of the difficulty in diagnosing and treating Lyme disease, up to two million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.

About Lyme Disease Biobank
Lyme Disease Biobank (LDB), a program of Bay Area Lyme Foundation, is a non-profit organization working to accelerate research of Lyme disease and other tick-borne infections. With a collection of biological specimens from more than 1,250 participants, including blood, serum, plasma, urine and tissue, LDB provides much-needed samples to approved researchers working to better understand tick-borne diseases and develop improved diagnostic tests and therapeutics. Blood and urine samples are collected from the Northeast, Upper Midwest and West Coast areas of the US, and tissue samples are collected throughout the country. Researchers interested in obtaining samples should visit www.lymebiobank.org or contact info@lymebiobank.org.

About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is the leading public charity sponsor of innovative Lyme disease research in the US. A 501c3 organization based in Silicon Valley, Bay Area Lyme Foundation collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. Historically a pivotal donation from the LaureL STEM fund covered all overhead costs through 2024. In 2023 a Bay Area Lyme Endowment was formed which allows for 100% of all donor contributions to the Bay Area Lyme Foundation to go directly to research and prevention programs in perpetuity. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.

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