Table of ContentsView AllTable of ContentsCausesSymptomsDiagnosisTreatment
Table of ContentsView All
View All
Table of Contents
Causes
Symptoms
Diagnosis
Treatment
However, in up to 10% of cases of people who have theerythema migrans rashor early disseminated Lyme disease, symptoms such as joint pain and swelling persist despite treatment.This is commonly called “chronic Lyme disease” and is clinically referred to as post-treatment Lyme disease syndrome (PTLDS).
Verywell / Paige McLaughlin
There’s some debate about the causes of post-treatment Lyme disease syndrome, and it’s considered more of a syndrome—a collection of symptoms—rather than a specific disease. In addition, there’s medical debate about whether theBorrelia burgdorferibacteria that causes the original onset of the condition is what causes relapses of symptoms.
Though clearly related, post-treatment Lyme disease syndrome has some distinct features and important differences from Lyme disease itself.
There’s no definitive explanation for why PTLDS arises, and for many years there was no real clinical recognition of the condition. In fact, it’s still controversial. In one study, only about 2% of physicians in Connecticut—an area where black-legged ticks are endemic—recognized this condition.
This contradicts the lived experience of the many people who continue to have symptoms after treating Lyme disease. Emerging from this debate, however, are several theories as to why it crops up:
Many researchers believe that PTLDS symptoms actually have nothing to do with Lyme disease. In a review of seven studies, 50% to 88% of the subjects believed they had this condition but showed no evidence of actually contracting Lyme disease in the first place.More research is needed to gain a better understanding of PTLDS.
Post-treatment Lyme disease syndrome is currently considered a syndrome—a set of symptoms with no agreed-upon cause—rather than a disease. Without a clearly established cause, it’s tougher to pin down.
According to the International Lyme and Associated Diseases Society, the working definition is the presence of symptoms (or some subset thereof) for six or more months after completion of antibiotic therapy.
While their symptoms overlap, there are also some key differences between post-Lyme disease syndrome and Lyme disease as it initially presents. For instance, neither the fever nor the “bullseye” rash commonly associated with Lyme disease is reported with PTLDS.
Those with PTLDS experience:
Beyond direct symptoms, PTLDS can severely impact mental health. Researchers at Johns Hopkins University found significantly higher levels of clinical depression and reduced quality of life when comparing those subjects with chronic Lyme disease and those without it.
Testing that’s used for Lyme disease detection—usually blood tests like the ELISA assay—largely won’t be effective for diagnosing PTLDS. Diagnosis of the condition primarily involves an assessment of medical status and history.
What are doctors looking for? You’re said to have chronic Lyme disease if:
In addition, the doctor may perform additional assessment and testing to ensure that no other condition is causing the issues. These may include:
At first onset, Lyme disease is treated with oral antibiotics like doxycycline. It was believed that chronic cases could be given long courses of this type of treatment, however this is unlikely to be effective.
However, other studies have found some positive effects from extended antibiotic treatments, and there are subjective reports of improvement. But prolonged use of antibiotics increases the risks of dangerous and debilitating side effects.
Given these risks, and with research showing no difference in outcome compared to placebo, the Centers for Disease Control and Prevention (CDC) currently recommends caution with this approach.
Primarily, then, treatment of chronic post-treatment Lyme disease syndrome treatment is a matter of symptom management. It likely also requires working with a sympathetic physician.
What might treatment approaches look like? These include:
Further, some evidence has emerged for the use of other substances, including:
These may provide benefits, in particular, because of their anti-inflammatory properties, which help ease the intensity of PTLDS symptoms. Others may help with depression. However, they’re not mainstream, standard approaches.
Prognosis
The good news about post-treatment Lyme disease syndrome is that it tends to resolve over time. However, recovery is never immediate, often taking six or more months.Rehabilitation may take even longer in cases where there has been nerve damage (causing tingling and numbness in the limbs).
Given the controversial nature of the condition—as well as the challenges associated with diagnosing it—it’s hard to get a real sense of how many recover from it. That said, among those researchers that acknowledge PTLDS, the expectation is that most do see a complete resolution to the issue.
A Word From Verywell
What makes post-treatment Lyme disease syndrome particularly challenging is that it can be unpredictable. There is neither an established means of testing for it nor a singular, “silver-bullet” type treatment. It’s important to remember, however, that not only do most recover from this condition, but researchers are starting to gain a better understanding of it.
What does this mean? As with Lyme disease itself, an increasing number of doctors are receptive to the existence of PTLDS, which means that treatment and management approaches are continuing to improve. Further, therapies to manage the symptoms of the condition are also becoming sharper and more effective.
Things have changed. If you’re struggling with pain and discomfort following an infection, know that help is there for you.
8 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Lantos P.Chronic Lyme disease.Infect Dis Clin North Am. 2015;29(2):325-340. doi:10.1016/j.idc.2015.02.006
Rebman A, Bechtold K, 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. doi:10.3389/fmed.2017.00224
National Institute of Allergy and Infectious Diseases.Chronic Lyme disease.
Centers for Disease Control and Prevention.Post-treatment Lyme disease syndrome.
Ścieszka J, Dąbek J, Cieślik P.Post-Lyme disease syndrome.Reumatologia/Rheumatology. 2015;1:46-48. doi:10.5114/reum.2015.50557
Lantos P, Shapiro E, Auwaerter P et al.Unorthodox alternative therapies marketed to treat Lyme disease.Clin Infect Dis. 2015;60(12):1776-1782. doi:10.1093/cid/civ186
Cairns V.Supporting patients with long-term problems after Lyme disease.BJGP Open. 2020;4(3). doi:10.3399/bjgpopen20x101102
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