What You Need to Know About Post-Treatment Lyme Disease Syndrome

Lyme disease is a progressive bacterial infection transmitted by the bite of the black-legged tick (sometimes called “deer tick”). Most cases of this condition are effectively treated with antibiotic regimens of four to six weeks.

However, in up to 10% of cases of people who have the erythema migrans rash or 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).

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 the Borrelia burgdorferi bacteria 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.

Causes

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:

• Clusters of surviving bacteria: One theory is that clusters of the bacteria are unable to be treated by antibiotics and are able to reactivate and cause inflammation. Further, some believe that the bacteria collect to form cysts that are resistant to medication.
• Triggered autoimmune disorder: The theory with the most purchase in the medical community is that chronic Lyme is actually an autoimmune disorder triggered by Lyme disease. Autoimmune disorders are when the body’s own immune system starts attacking the body erroneously. As such, symptoms persist despite the lack of active infection.
• Bacterial debris: Researchers have postulated that PTLDS arises due to bacterial debris found to remain in the body following antibiotic treatment. This excess material is believed to trigger the inflammation associated with the condition.
• Other conditions: Some symptoms associated with PTLDS actually arise due to other kinds of infections or diseases, such as osteoarthritis or rheumatoid arthritis, among others. While some patient advocates consider these the result of Lyme disease, there is a lack of medical evidence supporting that claim.

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.

Symptoms

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:

• Fatigue
• Joint/musculoskeletal pain
• Sleep difficulty
• Hearing loss
• Muscular aches
• Cognitive dysfunction (brain fog)
• Cardiac effects (heart palpitations)
• Tingling and nerve pain

Notably, patients may have flare-ups and periods of remission with these symptoms. The symptoms are similar to those experienced by people with fibromyalgia and/or chronic fatigue syndrome.

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.

Certainly, the controversial nature of this condition—the fact that it’s often not recognized by doctors—only adds to this burden.

Diagnosis

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:

• You have had a confirmed Lyme disease diagnosis.
• There was a remission of symptoms following a normal course of antibiotic treatment.
• You have PTLDS symptoms, especially fatigue, skeletal or joint pain, and difficulty concentrating.
• Your daily life and mental health have been significantly impacted.   

In addition, the doctor may perform additional assessment and testing to ensure that no other condition is causing the issues. These may include:

• Blood tests to ensure you’re not infected with another type of bacteria, as in babesiosis, a rare and very dangerous tickborne disease
• Assessing medications you’re taking, as some drugs may produce side effects that cause symptoms
• Tests for autoimmune diseases, such as the antinuclear assay (ANA) if lupus is suspected, C-reactive protein (CRP) test and erythrocyte sedimentation rate (ESR) to look for general inflammation, and rheumatoid factor and cyclic citrullinated peptide (CCP) antibody if joint swelling is present
• Cancer screening to rule out malignancy
• Hepatic panel to test liver function if problems with this organ system are suspected
• Urinalysis and imaging to assess gland, liver, and/or kidney function
• Psychiatric evaluation to screen for bipolar disorder, schizophrenia, major depressive disorder, or other mental health conditions that can cause physical pain

Treatment

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.

One study assessing an intravenous course of antibiotic treatment for 30 days, followed by oral antibiotics for another 60, found no reductions in symptoms among PTLDS patients.

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:

• Antidepressants, such as Prozac (fluoxetine), Celexa (citalopram), or others
• Pregabalin and gabapentin, two drugs that typically treat fibromyalgia
• Pain-relieving drugs, such as nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Advil, etc.), Tylenol
• Psychotherapy to manage mental health challenges
• Lifestyle changes, such as emphasizing exercise and improving diet

Alternative medicine, such as taking certain herbs, vitamin supplements, or other methods, may also be considered. However, it’s important to note that these approaches have not been adopted by the medical community at large. Nonetheless, many swear by them.

Further, some evidence has emerged for the use of other substances, including:

• Manuka honey
• Omega-3 fatty acids (fish oil)
• Vitamin B12
• Turmeric

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.

People with PTLDS were, for many years, dismissed by a majority of the medical establishment. However, as diagnoses of Lyme disease have gone up, so have the numbers of those reporting persistent symptoms.

Things have changed. If you’re struggling with pain and discomfort following an infection, know that help is there for you.