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How Is Post-Treatment Lyme Disease Syndrome (Chronic Lyme Disease) Managed?

by — Last updated: 2018-06-01 in Nervous System Disorders and Diseases
Reviewed by Medical Team — 2018-06-01

Lyme Disease is enough of a nightmare in itself, but for some, it doesn't end with treatment. Welcome to post-treatment Lyme Disease syndrome.

Most people who receive a Lyme Disease diagnosis make a fast and full recovery from the tick-borne infection once they're treated with the appropriate antibiotics, especially if they had Stage 1 Lyme Disease when treatment commenced [1]. A significant minority of Lyme Disease patients are, unfortunately, still suffering from Lyme Disease symptoms six months after treatment, and also develop new symptoms. If you're one of them, you may have something called post-disease Lyme Disease syndrome, also sometimes known as chronic Lyme Disease.

What Are The Symptoms Of Post-Treatment Lyme Disease Syndrome?

Signs of chronic Lyme Disease can vary from person to person, and may include [2, 3]:

  • Musculoskeletal pain (myalgias, joint paint, neck and back aches)
  • Persistent fatigue
  • Severe headaches
  • Cognitive difficulties such as a lack of concentration, short-term memory loss, slowed speech, and depression

You might be diagnosed with post-treatment Lyme Disease syndrome if you had a clinical Lyme Disease diagnosis and received antibiotics to treat it, but suffer from continuous or recurring symptoms for at least six months after you've completed your treatment. Your symptoms must be invasive enough to have an impact on your daily functioning to receive this diagnosis. [4]

What Causes Post-Treatment Lyme Disease Syndrome?

While the cause of post-treatment Lyme Disease syndrome isn't yet clear, three main hypotheses have been proposed [5]:

  • Your body may develop an inflammatory response after you developed Lyme Disease, even though the infection itself was fully cured. Lyme Disease has, in other words, done permanent damage to your body that is not addressed when the infection is treated.
  • The bacteria causing Lyme Disease, Borrelia burgdoferi, are still present in your body but hiding out in places where they're not readily found, such as the joints — in which post-treatment Lyme Disease syndrome patients almost always have symptoms.
  • The third theory amounts to "correlations doesn't equal causation": Patients attribute their symptoms to their previous Lyme Disease, but this is not their true cause.

What is known is that you are more likely to suffer from post-treatment Lyme Disease syndrome if you had Stage 2 (early disseminated) or Stage 3 (late disseminated) Lyme Disease at the time of diagnosis and treatment, if your symptoms were severe, and if you had neurological symptoms at the time you were first treated for Lyme Disease. [2] You may still develop post-treatment Lyme Disease syndrome if you do not have any of these risk factors, however.

As relatively straightforward as treating Lyme Disease is, post-treatment Lyme Disease syndrome presents a real treatment challenge. What are your options?

Post-Treatment Lyme Disease Syndrome: What Are Your Treatment Options?

Let's first talk about what doesn't work. Clinical trials have shown that prolonged IV antibiotics do not lead to improved symptoms as compared with placebo treatment [6], and may place even place your health and life at serious risk [7]. Antibiotics for chronic Lyme Disease don't work, in short, and the CDC further warns against any alternative therapies for chronic Lyme Disease [8], which would be any treatments that are not evidence-based. 

Once diagnosed with post-treatment Lyme Disease syndrome, your doctor will instead focus on treating your symptoms — which are as individual as the people suffering from them. You may receive treatment for fatigue, arthritis, and headaches separately, for instance, and may benefit from exercise regimes and cognitive behavioral therapy as well. [9] Simultaneously, your healthcare provider may look to rule out other possible causes of your symptoms. Should you receive additional diagnoses over the course of this process, those will be treated. 

Chronic Lyme Disease And Post-Treatment Lyme Disease Syndrome: Not Necessarily The Same Thing

Post-treatment Lyme Disease Syndrome is a very real (and very nasty!) condition. Research has found, however, that symptoms similar to those of either late-stage Lyme Disease or post-treatment Lyme Disease syndrome are not uncommonly attributed to Lyme Disease in the complete absence of lab tests that indicate the presence of Borrelia burgdoferi. [3] 

That "are attributed" obviously begs the question — by whom? Over the course of writing about Lyme Disease, I've learned that this isn't, as I initially suspected, just a case of "Dr Google" self-(mis)diagnosis. Reading message boards where people with so-called chronic Lyme Disease congregate, I've become aware that these diagnoses are often made by practitioners of alternative medicine, including naturopaths, and occasionally by actual doctors of medicine as well.

Whether you suspect you have chronic Lyme Disease because because of web-browsing or because a real-life healthcare provider type person told you so, be aware that chronic Lyme Disease is not a clinical diagnosis [3]. The term post-treatment Lyme Disease syndrome is preferred for those who were previously diagnosed with Lyme Disease and treated for it. There is no reason people who did not test positive for Borrelia burgdoferi antibodies after the relevant lab tests (and don't live in tick-endemic areas or have a history of tick bites) would be diagnosed with "chronic Lyme Disease".

If this applies to you, we're not doubting your symptoms are real — and we know that your "mystery diagnosis" is still waiting to be made. Rather than delving into the waters of alternative and unproven medicine, please consult a medical doctor. To the point of boredom, if need be. Answers are out there for you, though they probably don't come in the shape of a tiny arachnid.

  • Photo courtesy of SteadyHealth.com