Chronic Lyme Disease symptoms can include everything from the arthritis and neurological symptoms of untreated, disseminated late-stage Lyme to the so-called “post-Lyme” fatigue, joint pain, headache, brain fog, and other symptoms that persist even after treatment with antibiotics.

chronic lyme disease symptoms

Some doctors have insisted that most chronic Lyme Disease symptoms are an autoimmune effect.

The truth is, there’s still no consensus on what chronic Lyme is — or even if it exists at all. There’s a lot of politics involved, and one side of the argument argues that it’s not LD at all — that the original LD infection did, in fact, respond to antibiotic treatment.

That’s little comfort for those still sick.

So What’s the Deal?

Some doctors dismiss chronic LD symptoms as either purely psychosomatic or the complaints of malingerers, often citing the crushing fatigue and other chronic symptoms as “minor” effects at worst. This has not endeared them to those with lives devastated by the illness. They feel betrayed by these doctors.

Other medical specialists accept the chronic Lyme symptoms as real, but claim that the symptoms stem from the body’s misguided attempt to fight Borrelia spirochetes no longer present. Basically, the immune system has gone wrong, they say, and the body is attacking itself.

IDSA Guidelines

The doctors on the board of the Infectious Diseases Society of America (IDSA) has spearheaded the redefinition of chronic LD as an autoimmune response, refusing to accept that any form of LD can survive treatment with the proper antibiotics.

They especially rule out any course of antibiotic treatment longer than 28 days — even though Lyme literate doctors have shown that these treatments do work in many cases.

IDSA also recommends against any treatment with anti-Bartonella medications (they don’t believe in co-infections either), ozone, hyperbaric oxygen, nutritional supplements, IV immunoglobulin, or a number of other therapies, even though some may be effective and the others can’t hurt.

Their argument is that there’s no biological plausibility for these treatments, that they lack efficacy. Their critics argue that they ignore evidence that clashes with their conclusions, and that the IDSA board members have conflicts of interest that would cause them to argue against the use of some of these treatments.

What Does the Science Say?

In this case, the science is ambivalent at the moment. A number of researchers have demonstrated the presence of Borrelia spirochetes in the tissues of chronic Lyme Disease patients, even those who have already undergone antibiotic treatment. Some of the spirochetes were living, some dead, others encysted.

Meanwhile, there’s mounting evidence that immune system reactions may very well be causing some of the observed symptoms, at least in some patients. This suggests that some cases of chronic LD may indeed be the result of autoimmune responses, putting them out of reach of any antibiotic treatment.

This is the reasoning behind IDSA’s draconian treatment guidelines, which are quite defensible if chronic Lyme really is an autoimmune issue.

The Bottom Line

The big problem here is that Lyme Disease, especially the chronic version, is still mostly a mystery. We know what causes at least the initial symptoms, but we don’t know how, exactly — and the cure remains uncertain. The attempt to turn LD into a black and white, simplified disease has stymied us.

This effort is understandable, because how else are we going to figure it all out? But maybe the simplification has gone too far.

If chronic LD can be representative of real Borrelia infections and autoimmune response, then a lot of people are going to be hurt before we recognize chronic Lyme Disease symptoms for what they actually represent.