Post-treatment Lyme disease syndrome is a serious problem
More than 300,000 people contract Lyme disease in the USA every year with many continuing to suffer from long-term illness. In some cases, those persistent symptoms have been dismissed by physicians as being psychosomatic, or caused by something other than Lyme disease. But now, researchers at the Johns Hopkins University School of Medicine acknowledge the existence of what is called Post-treatment Lyme Disease Syndrome (PTLDS).
by Daniel J. Cameron, MD, MPH
According to Rebman and colleagues, writing in the journal Frontiers in Medicine, PTLDS is a severe complication of Lyme disease.  The authors identified PTLDS using the Infectious Diseases Society of America (IDSA) proposed case definition.  “Briefly, this definition relies on prior physician-documented Lyme disease, treatment with standard of care antibiotics, and the development of significant fatigue, widespread musculoskeletal pain, and/or cognitive difficulties that last for a period of at least 6 months, and began within 6 months of a Lyme diagnosis and recommended treatment,” explains Rebman.
Individuals with PTLDS represent a group of patients who have been evaluated for “unexplained fatigue, pain, and neurocognitive symptoms by primary care and sub-specialty physicians,” the authors state. These patients are “highly and clinically significantly symptomatic, with poor health-related quality of life.”Nearly 60% of patients with post-treatment #Lyme disease syndrome had a delay in diagnosis or initial misdiagnosis. Click To Tweet
“PTLDS patients,” Rebman states, “exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls.”
According to the study findings, PTLDS can last for years. “Our cohort was a median of 3.6 years from onset of PTLDS symptoms to study enrollment, with a range of 8.3 months to 27.7 years,” states Rebman.
And, PTLDS can occur even in Lyme disease patients treated within 30 days of the onset of symptoms. “Time from illness onset to first recommended course of antibiotic treatment was a median of 30 days,” according to Rebman.
Additionally, 59% of the patients with PTLDS reported having a delay in diagnosis or an initial misdiagnosis. Risk factors for PTLDS include a delay in diagnosis and an increased severity of initial illness, including the presence of neurologic symptoms.
The authors did not address other manifestations including chronic neurologic Lyme disease  and neuropsychiatric Lyme disease. 
The Johns Hopkins study should put to rest the false narrative perpetuated by the 2006 IDSA treatment guidelines which states, “In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection.” 
- Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
- Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.