Cures deemed worse than misdiagnosed chronic Lyme disease

200617 lyme 1
Scanning electron micrograph of Gram negative, anaerobic, Borrelia burgdorferi bacteria, the pathogenic organism responsible for causing Lyme disease. There is no evidence that so-called chronic Lyme disease has any connection with B. burgdorferi infection.
Credit: Callista Images/Getty Images

The peak public health body in the United States, the Centers for Disease Control and Prevention (CDC), has issued a warning about treatments offered for a disease that doesn’t exist.

Chronic Lyme disease – not to be confused with standard Lyme disease, which does exist – is claimed by a minority of doctors and many self-proclaimed healers to be a long-term health condition marked by fatigue, lethargy and generalised pain.

No serious medical organisation recognises the disease as real, and no peer-reviewed study has ever identified a causal agent for it. Nevertheless, over several years a large number of practices have sprung up in the US – and elsewhere, including Australia – claiming to be able to treat it.

The CDC’s warning comes after the organisation identified a range of serious, and sometimes fatal, outcomes arising from chronic Lyme disease treatments. The adverse events include septic shock, osteomyelitis, Clostridium difficile colitis and paraspinal abscess.

The problems are caused by a wide range of treatments, which include “extended courses of antibiotics (lasting months to years), IV infusions of hydrogen peroxide, immunoglobulin therapy, hyperbaric oxygen therapy, electromagnetic frequency treatments, garlic supplements, colloidal silver, and stem cell transplants”.

Chronic Lyme disease is ostensibly a secondary condition arising from Lyme disease – a well-known and well-described infection caused by a microbe, Borrelia burgdorferi, spread by ticks.

Standard Lyme disease causes fever and headaches but resolves after a two- to four-week course of antibiotics. It can be definitively diagnosed from the presence in the bloodstream of the microbe.

The CDC warning points out that in standard Lyme disease traces of B. burgdorferi can still be detected through testing many months later. Many chronic Lyme disease diagnoses, however, are made even though the usual tests show no trace of infection.

This reflects a “a belief among persons who support the diagnosis and treatment of chronic Lyme disease that B. burgdorferi can cause disabling symptoms even when standard testing is negative”.

The CDC goes on to cite five case studies, detailing people who either became seriously ill or died following chronic Lyme disease treatments.

In one case, a young woman died of septic shock. In another, an older woman died because a bogus chronic Lyme disease diagnosis and treatment delayed proper discovery of the real cause of her illness — amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

This second case illustrates a particular worry for public health officials confronted with a growing number of chronic Lyme cases.

“A significant concern is that after the diagnosis of chronic Lyme disease is made, the actual cause of a patient’s symptoms might remain undiagnosed and untreated,” the warning notice states.

The CDC’s statement is the latest in a serious of alarm bells rung about chronic Lyme disease. In February, the American Journal of Medicine ran a commentary led by epidemiologist and paediatrician Eugene Shapiro of Yale University criticising “false and misleading information about the diagnosis and treatment of Lyme disease”.

Shapiro and colleagues slammed medical professionals and others profiting from ostensible treatments for chronic Lyme disease. 

They had especially harsh words for elected representatives that successfully lobbied to have the condition recognised by insurance providers despite the lack of credible evidence it exists: “Politicians are attempting to displace mainstream physicians as diagnosticians in the complex world of Lyme disease by passing legislation that encourages the use of unproven treatments and that requires health insurance companies to pay for unsafe remedies with no documented benefit and well-documented adverse effects.”

They went on to call for all chronic Lyme disease treatments to cease, and the time and money thus saved to be redirected into finding out what was causing people to seek treatment in the first place.

“By so doing,” they concluded, “we might begin to improve the lives of those who are genuinely and indisputably suffering – just not from Lyme disease.”

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