Post Treatment Lyme Disease Syndrome

Some people who contract Lyme Disease and complete the standard treatment for it continue to experience problems. In the past, this was often called Chronic Lyme Disease. Until recently, the medical community was skeptical about the existence of the condition and often labelled patients either neurotic or depressed. In addition, some doctors were calling a number of illnesses by this designation, even if the patient had no prior or current Lyme Disease.

Post Treatment Lyme Disease Syndrome - 4-word bound

In 2016 a report was published by Dr. Aucott of Johns Hopkins in which he demonstrated a preference for the designation “post treatment Lyme disease syndrome. The report summarized his studies of people who continued to remain ill after Lyme Disease treatment. He concluded that there is, indeed, such a syndrome.

Aucott reported that he and his team had identified subgroups among Lyme Disease patients. In particular, one subgroup was post treatment Lyme disease syndrome. In this report, he identified the two critical characteristics of this syndrome:

  1. Through a thorough review of medical records, they found that these patients had Lyme Disease at some point in the past (ranging from 6 weeks to 6 months). They were treated for Lyme Disease, but they remained sick.
  2. They never recovered from Lyme Disease.

Aucott, who called this syndrome “a lifetime of debilitating symptoms,” said, “In post treatment Lyme Disease syndrome, the antibodies appear to be gone but the immune system keeps fighting.” He and other experts suspect that genetic factors may keep the patients’ immune system turned on after the infection is gone, triggering an autoimmune disorder.

Today there is no treatment for the syndrome and no test to diagnose it.

Ongoing research is being conducted by the Lyme Disease Clinical Research Center at Johns Hopkins University Department of Medicine. Learn more at