The increased incidence and geographic expansion of Lyme disease has made it the most common vector-borne infection in North America, and Post Treatment Lyme Disease Syndrome (PTLDS) represents a growing subset of patients who remain ill with persistent symptoms following standard antibiotic therapy. This is the first study to utilize a rigorous case definition to characterize PTLDS and validate the significance of the spectrum of symptoms and detrimental impact on quality of life of PTLDS compared to healthy controls. This study shows that well-validated symptom surveys could be used by doctors to identify suggestive symptom patterns that could lead to the diagnosis of PTLDS.
Why was this study done?
There is a growing population of Lyme disease patients suffering with Post Treatment Lyme Disease Syndrome (PTLDS). Patients with PTLDS experience persistent symptoms and quality of life impairment for 6 months or longer following standard of care antibiotic treatments. Delayed diagnosis and delayed treatment increase the risk of PTLDS. There are no FDA approved therapies for PTLDS. This is the first study to utilize a rigorous case definition to characterize PTLDS and validate the significance of PTLDS symptoms and quality of life impact compared to a sample of healthy controls.
How was this study done?
Participants with Post Treatment Lyme Disease Syndrome were identified using rigorous criteria to document the relationship of their illness to an episode of Lyme disease. Lyme disease participants and controls were evaluated by physical exam, clinical laboratory testing, standardized questionnaires, and a 36-item current symptom list to evaluate differences between the two groups. Sixty-one participants who met the rigorous case definition for PTLDS were included in the study. Twenty-six healthy controls had neither a clinical history of Lyme disease nor current antibodies to Borrelia burgdorferi.
What were the major findings?
Although physical exam and clinical laboratory tests showed few objective abnormalities among participants with PTLDS, our standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic. Compared to controls, participants with PTLDS reported significantly greater fatigue, musculoskeletal pain, sleep disturbance, and depression, and significantly lower quality of life. Participants with PTLDS also reported significantly higher severity of an additional 19 diverse symptoms that were not part of the IDSA criteria but which could be diagnostically and clinically relevant. Among these, sleep difficulty was the most frequently reported current symptom and may be a clinically important component of this syndrome as well. One objective measure, a higher rate of diminished vibratory sensation on physical exam (neurologic abnormality) was significant in PTLDS and could also be helpful in a clinical diagnosis.
What is the impact of this work?
In the absence of a direct diagnostic biomarker, PTLDS has been difficult to diagnose by physicians. This study is the first demonstration that Post Treatment Lyme Disease Syndrome is an identifiable illness using a well-documented case definition and systematic and validated approach to clinical diagnosis and symptom measurement. This study represents the first to compare patients with rigorously defined PTLDS to non-Lyme infected controls on a range of clinical, laboratory, symptom, and quality-of-life parameters. Our comprehensive case series suggests that the patient-reported symptoms of PTLDS and their effect on life functioning can be clinically significant and long-lasting, regardless of initial Lyme disease presentation. The pattern of symptoms identified in this study could be used as a tool to suggest the diagnosis of PTLDS, and well-validated symptom surveys could be used by doctors to both identify and monitor treatment progress in patients with PTLDS. Physicians need to remain alert for the diagnosis of PTLDS when evaluating patients with otherwise unexplained symptoms or prior Lyme disease histories. 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.
This research was supported by:
This work was supported by the Global Lyme Alliance and the Steven and Alexandra Cohen Foundation.
Link to original research article:
The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Rebman AW, Bechtold KT, Yang T, Mihm EA, Soloski MJ, Novak CB and Aucott JN (2017) The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front. Med. 4:224. doi: 10.3389/fmed.2017.00224