A newly published study in Frontiers in Medicine reveals serious gaps in Lyme disease testing and post-treatment care, based on a decade of patient data collected by the Lyme Disease Biobank.
The research, supported by the Bay Area Lyme Foundation, followed 253 participants in Lyme-endemic areas of Long Island, New York, and Central Wisconsin between 2014 and 2023.
All presented signs of early Lyme disease, yet only 23% tested positive using the CDC’s recommended two-tiered test. Even among those with diagnostic Lyme rashes larger than five centimeters, just 34% tested positive.
The study also found that 21% of patients reported lingering symptoms—such as fatigue, joint pain, and muscle aches—three months after antibiotic treatment. Despite this, only 35% of those experiencing ongoing symptoms followed up with healthcare providers.
Early diagnosis is critical
“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.
“Our data also confirm the limitations of serology testing in early Lyme disease and after antibiotic treatment.”
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, postmortem and surgical tissue, as well as controls.
“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 benefited from Lyme Disease Biobank samples, and studies of this size and magnitude would not have been possible without its existence.”
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