Skeptical Raptor's Blog hunting pseudoscience in the internet jungle

Chronic Lyme disease–myth or science?

Lyme disease is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia. Of the three species, Borrelia burgdorferi is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii are more prevalent in Europe. The disease is named after the towns of Lyme and Old Lyme, Connecticut, where a number of cases were initially identified in 1975. 

Borrelia is transmitted to humans when bitten by infected ticks belonging to a few species of the genus Ixodes, called “hard bodied” ticks. Although deer ticks, Ixodes scapularis, Ixodes pacificus, or Ixodes ricinus, are commonly considered to be the vectors for Borrelia infection, some of the other Ixodes species can transmit the disease.

The initial symptoms of Lyme disease include feverheadachefatiguedepression, and a circular skin rash called erythema migrans (EM). If the Borrelia infection is not treated quickly, later symptoms may involve the joints, heart, and central nervous system. In general, the infection and its symptoms can be treated, if started early, by antibiotics. Lyme disease is the most common tick-borne disease in the United States.

Myth

The problem with delayed or inadequate treatment of Lyme disease is that it can lead to the more serious symptoms, which can be disabling and difficult to treat. Difficult, but science-based medicine provides sufficient evidence that it can be successfully treated. 

And this is where the pseudoscience begins. There is a vocal group, the International Lyme And Associated Diseases Society, made up of patients, doctors and other advocates, that is pushing a belief that the Borrelia bacteria can hide out in the body and persist even after treatment, causing a vague list of symptoms, from night sweats and depression to back pain and vertigo. This group, and others who share this belief, argue vehemently that a cure requires not weeks but months or years of strong antibiotics. And they also believe that the disease sometimes just goes into remission, with frequent relapses. On the ILAD website, they attempt to portray the disease as an almost impossible disease to treat:

Chronic Lyme disease patients may face a long hard fight to wellness. People with chronic Lyme can have many debilitating symptoms, including severe fatigue, anxiety, headaches, and joint pain. Without proper treatment, chronic Lyme patients have a poorer quality of life than patients with diabetes or a heart condition.

The fact is Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available which leaves many—patients and physicians alike—relying on the so called “telltale signs” of Lyme disease: discovery of a tick on the skin, a bull’s eye rash, and possibly joint pain. However, ILADS research indicates that only 50%-60% of patients recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter anti-inflammatory medications such as Ibuprofen, joint inflammation is often masked.

Based on these statistics, a significant number people who contract Lyme disease are misdiagnosed during the early stages, leading to a chronic form of the disease which can prove even more difficult to diagnose and treat. Lyme disease is often referred to as the “great imitator” because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment. ILADS is committed to the prevention of chronic Lyme disease. 

The blogosphere is filled with stories, always anecdotal, about this chronic form of Lyme disease. In a recent article, Laurie McClellan described how her husband got ill from an unknown disease in 2009. She wrote that “Pat (her husband), who’d been climbing mountains a few years ago, now struggled to walk a city block. Two doctors were telling us that he had a certain disease, that it was treatable, and that he could recover. But the standard medical authorities were telling me that this condition didn’t exist and that the proposed treatment was ineffective and harmful.” With no improvement in his condition over a year, they went to a Lyme disease clinic, where, despite negative tests for Lyme disease, Pat “was given prescriptions for a sophisticated regimen of drugs to control his symptoms, plus multiple antibiotics to fight the infection. He would need to take the drugs for the next year or so. He started swallowing some twenty-five pills a day, and the pace of his recovery picked up.” 

McClellan tells the story of a friend’s daughter who was “an honor-roll student who took several dance classes each week, she became so fatigued that she had to sit out much of her senior year of high school. She suffered from joint pain so severe that she sometimes just lay on the sofa and wept, and she lost her ability to read. One neurologist declared that she was merely anxious, but another doctor diagnosed chronic Lyme disease. After a year of antibiotics, she was well enough to start college.”

From her own personal story, her friend’s daughter, and reading stories on the internet, McClellan chose to accept a diagnosis of chronic Lyme disease for her husband, despite the lack of a positive diagnostic test. Laurie McClellan is a science writer, so my expectations for her critical thinking skills is high, so why would she accept a diagnosis of chronic Lyme disease despite the evidence that it doesn’t exist? Why wouldn’t she consider alternative diagnoses that make more sense? Whatever the reason, the pull of the simplistic pseudoscience is too hard to resist, even for a science writer.

Science

According to an article in The Lancet by a group of infectious disease physicians from Johns Hopkins, “these (chronic Lyme disease) advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science.” The Hopkins group even go as far as stating that “advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments.”

Here’s what we know. Almost all infectious disease researchers agree that the Borrelia bacteria causes Lyme disease and can stay in the body for years, if not treated correctly. However, nearly all of these researchers believe that a short course of antibiotics is enough to wipe out the infection. The debate about chronic Lyme disease has been has been fought for a few years, but there just is no peer-reviewed evidence in support of an epidemic of persistent yet invisible Lyme disease infections. One of the hallmarks of pseudoscience is the failure to progress towards additional evidence of its claims. 

On the other hand, the National Institute of Allergy and Infectious Diseases (NIAID) funded three clinical trials that failed to show any benefit of long-term antibiotic therapy in individuals who have no evidence of an active Borrelia infection.   

  • Klempner et al. concluded that “there is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease. However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo.
  • Krupp et al. concluded that “this study does not support the use of additional antibiotic therapy with parenteral ceftriaxone in post-treatment, persistently fatigued patients with PLS (post-Lyme syndrome).”
  • Fallon et al. published an article discussing research where chronic Lyme disease patients were treated for Lyme disease and presented with objective memory impairment tests. The group that received antibiotic therapy showed slightly greater improvement than the placebo group at 12 weeks, but at 24 weeks, both the antibiotic and placebo groups had similar improvement from the baseline results. However, because of the adverse effects of the IV antibiotic therapy, which afflicted about 26% of the antibiotic group, the authors concluded that because of the limited and minor improvement in cognitive function in combination with the adverse effects, the antibiotic therapy was not an “effective strategy for cognitive improvement in these patients and more durable and safer treatment strategies are still needed.”
NIAID concludes that “carefully designed, placebo-controlled studies have failed to demonstrate that prolonged antibiotic therapy is beneficial. Although isolated success stories are always good to hear, such reports alone are not sufficient grounds to support a therapeutic approach.” In other words, not only is there no evidence that chronic Lyme disease exists, but there is extremely high quality evidence, published in high impact, peer-reviewed journals, that the accepted therapy for chronic Lyme disease, long-term antibiotic therapy, doesn’t work. 

A recent study published in the New England Journal of Medicine found “that repeat episodes of erythema migrans (the typical rash) in appropriately treated patients were due to reinfection and not relapse.” They examined the genetic makeup of the bacteria found in these rashes to determine that they were new, not recurrent, infections. In other words, these particular patients, who had claimed to have a chronic Lyme disease probably were bitten by another tick.

In a review article, published in 2011, seven studies were conducted in endemic areas that included nearly 2,000 patients with suspected Lyme disease. It was determined that “only 7–31% had active Lyme disease and 5–20% had previous Lyme disease. Among the remainder, 50–88% had no evidence of ever having had Lyme disease.” These patients probably had alternative medical diagnoses like chronic fatigue syndrome or fibromyalgia.

What the Skeptical Raptor says

The Johns Hopkins group stated rather harshly, “the relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.”

There is no evidence that chronic Lyme disease exists. There is no evidence that long-term antibiotic therapy does anything for those who have the symptoms associated with the nonexistent chronic Lyme disease. Unless some strong, peer-reviewed publications that support the existence (and subsequent treatment methods) for this disease, then standard treatment of Lyme disease should be considered the gold standard. 

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