The Chronic Lyme Conundrum PDF Print E-mail
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Written by Dr. Steven Novella   

One of the major exports of the US, unfortunately, is pseudoscience. In fairness, we import a fair amount of pseudoscience as well. The nonsense of other cultures can seem exotic.

A recent report from Canada indicates that one of the major medical controversies from the US, alleged chronic Lyme disease, is now a controversy in Canada as well.

Lyme disease is a bacterial infection with the spirochete Borrelia burgdorferi (primary cause of Lyme in North America with other related species dominating in Europe). Similar to syphilis, which is also caused by a spirochete, Lyme has three phases: a localized primary infection stage which may cause a diagnostic rash called erythema chronicum migrans (this is the classic bulls-eye rash), an early disseminated secondary phase which can cause flu-like symptoms or meningitis and then a late disseminated tertiary phase that can cause chronic infection of the nervous system, joints, or heart.

The controversy surrounds tertiary Lyme. The accepted conclusion based upon existing evidence is that the Lyme spirochete can be eradicated with intravenous (IV) antibiotics and that no more than 30 days of treatment is necessary. If symptoms persist, a second 4 week course may be given, but that is the extent of the recommendations. The treatment guidelines published by the Infectious Disease Society of America include this statement:

Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed-dosing (i.e., dosing on some days but not others), long term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others.

The key phrase in there is “long term antibiotic therapy.”

If symptoms persist after complete treatment for Lyme, those symptoms are referred to as “post-treatment Lyme disease syndrome (PTLDS), which is a descriptive label that is deliberately non-committal about cause. This syndrome is not well understood, but the working hypothesis is that the infection caused damage that persists after the infection is gone, or has triggered a post-infectious autoimmune syndrome.

What I describe above is the accepted evidence-based view. There of course is still room for further research, but there is sufficient evidence on which to make solid treatment recommendations.

There is another view, however, held by a subculture of patients and a fringe of practitioners (called “Lyme-literate” by the community). They believe a number of things that differ from the mainstream medical community:

  •         Lyme disease can exist even with persistently negative blood tests for Lyme (ELISA and Western blot)
  •         Lyme can persist even after maximal recommended IV antibiotic therapy
  •         Lyme can exist with mainly non-specific symptoms, and without any of the classic symptoms of chronic infection generally or Lyme specifically
  •         Long-term antibiotics can manage the symptoms of so-called chronic Lyme disease, even if it does not cure it.

In essence, this view maintains that patients can have atypical, seronegative, treatment-resistant Lyme disease. That is a lot of special pleading, not unlike Sagan’s invisible, floating dragon that breaths heatless fire. It doesn’t take a conspiracy to entertain the hypothesis that perhaps many of these patients (perhaps all) have something else.

Those who believe they have chronic Lyme (and often the journalists who cover their stories) are quick to argue that they are suffering and need treatment, as if the compassion high-ground is entirely on the side of believers in chronic Lyme. But it is precisely compassion for patients that causes the medical community to follow the best evidence here. Those who believe they have chronic Lyme when they don’t may be missing out on treatment for whatever is really causing their symptoms and may be exposed to the risks of long-term antibiotics without any benefit (beyond the predictable placebo effects).

As with any complex medical or scientific question, the evidence is complex, allowing for a variety of interpretations. The majority interpretation, however, is that controlled trials of IV antibiotics in patients identified as having chronic Lyme disease show the treatment to be ineffective.

However, the believers can cite evidence as well. A reinterpretation of the above studies argues that they were underpowered and that some outcomes were positive.

Part of the complexity here is that there are multiple sub-groups – those who never tested positive for Lyme, those who had documented Lyme but have persistent symptoms following treatment – and multiple outcomes: fatigue, cognitive function, arthritis, or overall functioning.

It takes some clinical and scientific judgment to decide how to best synthesize all this evidence. What the consensus of expert opinion says is that there is insufficient evidence of benefit to justify the risks of long-term antibiotics. My personal addition to this is that the arguments on the side of the believers in chronic Lyme disease sound very familiar, and are of the same sort as those arguing that ESP is genuine, or that homeopathy is effective.

Specifically, the arguments mostly amount to special pleading, data mining, and cherry picking. The symptoms that appear to respond to treatment are the most subjective symptoms, and they relapse soon after treatment stops. This is a pattern most consistent with placebo effects, not a real biological effect.

Conclusion

The question of whether or not chronic Lyme disease exists as a chronic infection with the Lyme spirochete is an interesting and complex one. I do agree that more research is needed to rise to the level where we can put this issue entirely to bed, including all the subquestions about specific symptoms and subpopulations.

Medicine, however, is an applied science. At any point is time we have to make clinical decisions and recommendations based upon the best current evidence. I agree with the consensus that the best current evidence indicates that long-term antibiotics are not justified in patients with chronic symptoms they believe are due to Lyme disease. There is sufficient evidence to make this decision the standard of care, with all that that implies.

For those practitioners who are in the minority, I would prefer that they would properly perceive that the onus is now on them to do rigorous research that can settle the controversy, rather than rail against the conspiracy of the mainstream and seek protection from gullible legislatures.

The latter is exactly what happened a few years ago in my home state of Connecticut. The legislature passed a law protecting practitioners from the standard of care with regard to treating Lyme disease. This was an arrogant and unfortunate political intrusion onto a scientific question, wrapped up in a conspiracy theory.

The proper response to a scientific controversy is more science, not politics.

 

Steven Novella, M.D. is the JREF's Senior Fellow and Director of the JREF’s Science-Based Medicine project.