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Johns Hopkins researchers: ‘Post-treatment Lyme disease syndrome (PTLDS) is a real disorder’

Researchers from the Johns Hopkins University School of Medicine are saying that chronic Lyme is real after releasing the results of a recent study published in Frontiers in Medicine in December.

In the study, sixty-one participants who met the proposed case definition for Post-treatment Lyme disease syndrome (PTLDS) were either self- or physician-referred to the Lyme Disease Clinical Research Center at Johns Hopkins.

With its abdomen engorged with a host blood meal, this image depicts a lateral, or side view of a female blacklegged, or deer tick, Ixodes scapularis/CDC

Roughly half were women and half were men, ranging in age between 18 and 82. Also recruited were 26 healthy controls, also split nearly evenly between the sexes and about the same ages as the other group, with no clinical history of Lyme disease symptoms and no antibodies to Borrelia burgdorferi that would indicate past or current infection.

A comprehensive battery of clinical and laboratory tests were run on the participants and a detailed medical history and neurological assessment was completed.

What researchers found was compared to controls, participants with PTLDS reported significantly greater fatigue, pain, sleep disturbance, and depression and significantly lower quality of life.

John N. Aucott, associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center said, “Post-treatment Lyme disease syndrome (PTLDS) is a real disorder that causes severe symptoms in the absence of clinically detectable infection.

“People have been comparing apples to oranges by grouping all of those with chronic Lyme disease together,” he says. “Our study was designed to compare apples to apples.

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“By and large, all the test and exam results from both the PTLDS patients and the healthy controls were not statistically significantly different by group, including their blood tests and physical exams.” Aucott says. “We found no truly objective markers of PTLDS on any of these clinically available tests.”

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However, he says, there were significant differences in the results from the questionnaires. About 50 percent of the PTLDS patients reported severe fatigue, about 28 percent reported severe pain, about 23 percent reported severe cognitive complaints and about 31 percent reported severe sleep difficulty. None of the healthy controls reported any symptoms in the “severe” range. In total, the researchers found 19 symptoms that are not part of the standard PTLDS criteria to be significantly more severe among the study participants with PTLDS than among controls.

“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, associate professor of physical medicine and rehabilitation at Johns Hopkins. “These symptoms are more severe than what the average non-PTLDS patient is experiencing even on a bad day.”

Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.

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