At long last, researchers have confirmed the presence of Lyme disease, an infection with Borrelia burgdorferi, following the recommended antibiotic treatment. Johns Hopkins University reported that chronic Lyme disease is a “real” disorder.
The study involved 61 patients who completed the recommended antibiotic course and continued to report symptoms of joint pain, fatigue, cognitive deficits, insomnia, and depression despite largely normal physical exams and blood testing. People with this holdover infection commonly call it chronic Lyme. Researchers call this collection (called constellation in medical speak) “post-treatment Lyme disease syndrome” or PTLDS.
Unfortunately, the study did not address what is perhaps one of the most controversial aspects of chronic Lyme–whether it’s caused by lingering infection and is treatable with additional courses of antibiotics.
Published in the December issue of in Frontiers of Medicine, these findings hopefully will spur further investigation into the cause of the persistent symptoms. Lyme disease rates have climbed steadily since the mid-1970s when it was initially recognized in Lyme, Connecticut. As the disease prevalence and incidence (how widespread and the number) have grown in the following decades, so have reports of what people with it call chronic Lyme.
Medical experts have questioned the existence of a persistent B. burgdorferi infection because there is no direct evidence of the bacteria’s ongoing infection in blood or tissue samples. To help distinguish persistent infection, researchers first studied people with PTLDS, defined by the Infectious Diseases Society of America as involving significant fatigue, widespread musculoskeletal pain and/or cognitive difficulties arising within six months after completion of antibiotic therapy for physician-diagnosed Lyme disease and lasting at least six additional months.
Study Parameters Were Rigorous
Researchers gathered prior medical records with evidence of Lyme disease and excluded all those who have conditions that may mimic those of PTLDS–like ME/CFS or fibromyalgia. They ended up recruiting 61 people who were either self- or provider-referred to the Lyme Disease Clinical Research Center at Johns Hopkins and met study criteria.
Individuals studied were almost evenly split between males and females, and ranged in age between 18 and 82. Healthy controls (n=24) were also split evenly between sexes and about the same ages as the study group but had no clinical history of Lyme disease symptoms and no antibodies to B. burgdorferi that would indicate past or current infection.
A comprehensive battery of tests and exams were performed on everyone. Study participants also completed standardized questionnaires to measure the severity of fatigue, pain, sleep disturbance and depression, as well as their quality of life.
Few clinically significant differences in blood tests or physical exams were found in comparing the control group with the PTLDS patients. The study did find, however, that some people with PTLDS had a diminished vibratory sensation–a marker for neurological involvement seen in other studies of Lyme disease.
There were significant differences in the results from the questionnaires meant to measure subjective experience. Approximately 50 percent of the PTLDS patients reported severe fatigue, 28 percent reported severe pain, about 23 percent said they had severe cognitive issues and about 31 percent reported severe sleep difficulty. None of the healthy controls reported any symptoms in the severe range.
The researchers found 19 symptoms that are not in the standard PTLDS criteria for diagnosis that were reported to be more severe among PTLDS patients than in controls. These symptoms included severe sleep difficulty (32%), severe neck pain (8%), severe numbness or tingling in hands or feet (10%), severe irritability (8%), severe low back pain (3%) and severe headache (17%). These symptoms reflect the significantly higher scores for depression and correspondingly lower scores on a questionnaire used to measure health-related quality of life, the SF-36.
No Clear Biomarkers Were Found
“Even though their exams and lab tests didn’t show much in the way of a common or clear biological marker or markers of PTLDS, it’s clear these patients don’t feel well,” says study co-author Kathleen Bechtold, Ph.D., associate professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine. “These symptoms are more severe than what the average non-PTLDS patient is experiencing even on a bad day.”Even with no objective laboratory or exam markers, Bechtold believes the results of this study suggest that PTLDS can be diagnosed through careful and thorough examination of symptoms. Finding a way to accurately identify people with PTLDS will improve diagnosis and care, as well as leading to future therapies. But as we have seen with ME/CFS, without objective laboratory or physical exam markers, mainstream healthcare providers likely are not going to diagnose it. The Johns Hopkins researchers are currently analyzing test results and blood to search for biomarkers that were not examined in the initial study.
The Centers for Disease Control and Prevention (CDC) estimate 300,000 people are diagnosed with Lyme disease each year. Of those diagnosed early and treated following infectious disease recommendations, between five and 30 percent go on to experience PTLDS. Factors such as delayed diagnosis and inappropriate antibiotics and steroids (like Prednisone) given before recommended treatment occurred in over half the PTLDS patients in this study. The Johns Hopkins researchers said this could account for the prevalence of chronic Lyme.
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