According to new research from the Bay Area Lyme Foundation, only one-third of early-stage Lyme disease patients experiencing persistent symptoms sought follow-up care.
New research published in Frontiers in Medicine highlights the need for greater medical follow-up to identify potential treatment failures.
The Bay Area Lyme Foundation, a leading Lyme disease research organisation in the United States, has announced the publication of new research in the journal Frontiers in Medicine. The study is based on data from the Bay Area Lyme Foundation’s Lyme Disease Biobank programme. The large-scale, 10-year study was conducted on the east coast and in the upper Midwest of the United States, and its results show that there is a need to improve diagnostic methods and strengthen medical follow-up for Lyme disease patients.
Only one-fifth (23%) of patients participating in the study with early Lyme disease symptoms tested positive based on the standard two-step Lyme test recommended by the CDC. This confirms previous research showing that this test fails to detect up to 70% of early-stage Lyme infections.
In addition, approximately one-fifth of patients reported symptoms persisting after three months, such as:
- joint pain
- fatigue
- muscle pain.
Despite this, only one-third (35%) of these patients returned to their healthcare provider due to persistent complaints. Due to the difficulties in diagnosing Lyme disease and the resulting delays in treatment, up to two million people may be suffering from persistent Lyme disease, which severely impairs their quality of life.
“Accurate and timely diagnosis of Lyme disease is key to preventing long-term complications. In addition, regular medical follow-up of all patients after completing antibiotic treatment could improve outcomes and reduce the burden of Lyme disease,” said Liz Horn, PhD, MBI, lead author of the study and principal investigator of the Lyme Disease Biobank. The Lyme Disease Biobank is a programme of the Bay Area Lyme Foundation that helps accelerate research by collecting, storing and making human biological samples available to researchers.
“Our data also confirm that serological tests have significant limitations in early Lyme infection and after antibiotic treatment.”
During the study, only 34% (43 out of 128 patients) of patients who developed a Lyme rash (erythema migrans) larger than 5 centimetres, which is considered a diagnostic sign of Lyme disease, tested positive with the CDC standard two-step test at the time of enrolment.
The study also confirmed that in many cases, IgG seroconversion, or the appearance of IgG-type antibody response, does not occur after antibiotic treatment. Of the patients who tested negative for IgG immunoblot in the first blood sample, only 4% (10 out of 233 patients) showed a positive IgG immunoblot result in the blood sample taken three months later.
At that time, 21% of patients (47 out of 226) reported that their symptoms persisted despite antibiotic treatment.
The study did not examine why only one-third (35%) of them returned to their doctor with these symptoms. However, other studies have well documented barriers to accessing care. According to MyLymeData, the world’s largest Lyme disease registry, people with chronic Lyme disease face a number of barriers, including:
- lack of health insurance or limited coverage
- the cost of healthcare
- long travel times and distances
- limited availability of appropriate care.
Participants in the study provided samples to the Lyme Disease Biobank, which collects samples from patients with early and chronic Lyme disease, as well as surgical and post-mortem tissue samples and control samples.
This study focused specifically on patients with symptoms of early Lyme disease who came from two endemic areas
- Long Island (New York State)
- Central Wisconsin.
Between 2014 and 2023, 253 participants provided blood samples on two occasions: at the initial examination and then three months later, during the recovery phase. The samples were tested using the CDC’s standard two-step diagnostic method, and patients completed questionnaires about their symptoms at both time points.
“The Lyme Disease Biobank was extremely forward-thinking in recognising early on that progress in research depends largely on the availability of large numbers of well-characterised patient samples from different manifestations of Lyme disease,” said Linden Hu, MD, professor of immunology at Tufts University School of Medicine, who collaborates with the Lyme Disease Biobank.
“Many research groups, including ours, have benefited greatly from these samples, and studies of this magnitude would not have been possible without the biobank.”
About Lyme disease
Lyme disease is the most common vector-borne infectious disease in the United States. The infection is caused by bacteria that are transmitted to humans or pets through the bite of an infected tick. The infection can also be transmitted from mother to foetus during pregnancy.
If the disease is detected early, most cases can be treated effectively. However, Lyme disease is often misdiagnosed, partly due to low awareness and partly due to inaccurate diagnostic tests.
The Bay Area Lyme Foundation estimates that there are more than 620,000 new cases of Lyme disease in the United States each year.
Due to the difficulties in diagnosis and treatment, up to two million Americans may be suffering from the long-term symptoms and complications of the disease.
About the Lyme Disease Biobank
The Lyme Disease Biobank (LDB) is a programme of the Bay Area Lyme Foundation. It is a non-profit organisation working to accelerate research into Lyme disease and other tick-borne infections.
The biobank has collected biological samples from more than 1,250 participants, including:
- blood
- serum
- plasma
- urine
- tissue samples.
The LDB makes these samples available to approved researchers to help improve understanding of tick-borne diseases and develop new diagnostic methods and treatments.
Blood and urine samples are collected from the northeastern, upper Midwest, and western coastal regions of the United States, while tissue samples come from across the country.
Researchers interested in samples can contact the organisation at www.lymebiobank.org or info@lymebiobank.org.
About the Bay Area Lyme Foundation
The Bay Area Lyme Foundation’s goal is to make Lyme disease easy to diagnose and simple to treat.
The organisation is the leading non-profit supporter of innovative Lyme research in the United States. Based in Silicon Valley, the non-profit foundation works with world-class researchers and institutions to accelerate medical breakthroughs related to Lyme disease.
In addition, it has an important mission to provide reliable, fact-based information to raise awareness about the importance of prevention and early treatment.
(C) Lyme Borreliosis Foundation
