What is Post-Treatment Lyme Disease Syndrome?

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It is considered normal for some patients convalescing from a severe illness to feel ill for up to six months. Some people who catch Lyme disease, and are treated with antibiotics, feel ill for longer than six months and in some cases never feel the same again.

Some appear to recover, but then start to feel worse again after they have finished their course of antibiotics. Some of them continue to have the same Lyme disease symptoms that they had before. Some have less specific symptoms of ill health, which may be mild, or may be disablingly severe.

Caudwell LymeCo Charity conducted a patient survey in 2016 and received 424 written responses to the question “How has having Lyme disease affected your quality of life?”
Read patients’ own descriptions of suffering this condition

Clearly these patients want to know why they are still ill. Regrettably, the small amount of research carried out so far gives us very little by way of an answer.

The condition that they have is called “Post-Treatment Lyme Disease Syndrome” (PTLDS) by researchers. These are some of the theories offered as explanations:

  1. The infection has altered the patient’s immune system in such a way that it is “overactive” and creates an inflammatory response, even though the infection has gone.
  2. The infection has triggered an autoimmune disease in people who were genetically predisposed.
  3. The illness has caused lasting injury to some parts of the body (e.g. joints, heart etc.) and the ongoing symptoms are part of the past damage.
  4. The bacteria have persisted despite the antibiotic treatment, and the infection is still present in the body.

It may be that more than one of these theories is correct, and that different patients fall into different categories. There may be another explanation that has not been considered yet. More research is needed to find out.

The cumbersome term “Post Treatment Lyme Disease Syndrome” causes irritation to some patients. Some of them say that the word “syndrome” trivialises the condition and implies it is not a real illness: however, this is really just a result of their misunderstanding of medical terminology. “Syndrome” simply means a collection of symptoms, and it is the correct word to use when the cause of those symptoms is not known. It does not imply that those symptoms are mild, imaginary or unworthy of the doctor’s attention. AIDS is, after all, a syndrome; its name is a legacy from the days when its viral cause was not yet known.

Some patients favour explanation 4, that the bacteria remain in the body, and prefer the term “chronic Lyme disease” as more indicative of the nature of the condition. Some private doctors also take this view. There is some research evidence that it is correct, and other evidence that it isn’t. This frustrating situation will only be resolved with higher quality research projects. If this explanation is correct, the most important question is: can the patient by cured with a longer course of antibiotics, or by combining more antibiotics? So far, appropriate research that could answer this question has not been done.

Some private doctors offer their patients long term courses of antibiotics to try to tackle this illness. Some of them make claims as to their success rates in treating patients in this way, and their claims vary. So far none of them has published their findings in a way that could be regarded as objective or quantitative.

In the meantime, some doctors offer their patients the same help and therapies that they offer to patients with Chronic Fatigue Syndrome. They do not think these treatments will cure the condition; the aim is to try to help the patients live with some of the symptoms (including pain and exhaustion) of a condition without a current proven cure.


Centers for Disease Control and Prevention: Post-Treatment Lyme Disease Syndrome

Time for a Different Approach to Lyme Disease and Long-Term Symptoms (New England Journal of Medicine) (Melia et al)

Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here? (Aucott et al)