Chronic Lyme disease (CLD) is the name used by some people with non-specific symptoms, such as fatigue, muscle pain, and cognitive dysfunction to refer to their condition, even if there is no evidence that they had Lyme disease. Both the label and the belief that these people's symptoms are caused by this particular infection are generally rejected by medical professionals. Chronic Lyme disease is distinct from post-treatment Lyme disease syndrome, a set of lingering symptoms which may persist after successful antibiotic treatment of infection with Lyme-causing Borrelia bacteria, and which may have similar symptoms to those associated with CLD.
Despite numerous studies, there is no evidence that symptoms associated with CLD are caused by any persistent infection. The symptoms attributed to chronic Lyme are in many cases likely due to fibromyalgia or myalgic encephalomyelitis. Fibromyalgia can be triggered by an infection, and antibiotics are not a safe or effective treatment for post-infectious fibromyalgia. Fatigue, joint and muscle pain are also experienced by a minority of people following antibiotic treatment for Lyme disease.
A number of alternative health products are promoted for chronic Lyme disease, of which possibly the most controversial and harmful is long-term antibiotic therapy, particularly intravenous antibiotics. Recognised authorities advise against long-term antibiotic treatment for Lyme disease, even where some symptoms persist post-treatment.
In the United States, after disciplinary proceedings by state medical licensing boards, a subculture of "Lyme literate" physicians has successfully lobbied for specific legal protections, exempting them from the standard of care and science-based treatment guidelines. Such legislation has been criticised as an example of "legislative alchemy", the process whereby pseudomedicine is legislated into practice. Some doctors view the promotion of chronic Lyme disease as an example of health fraud.
Description and background
Chronic Lyme disease is distinct from untreated late-stage Lyme disease, which can cause arthritis, peripheral neuropathy and/or encephalomyelitis. Chronic Lyme disease is also distinct from post-treatment Lyme disease syndrome (PTLDS) when symptoms linger after standard antibiotic treatments. PTLDS is estimated to occur in less than 5% of people who had Lyme disease and were treated. In contrast to these recognized medical conditions, the promotion of chronic Lyme disease has been accused of being health fraud. In many cases there is no objective evidence that people who believe they have chronic Lyme have ever been infected with Lyme disease: standard diagnostic tests for infection are often negative.
While it is undisputed that people can have severe symptoms of an illness, the cause and appropriate treatment promoted by "chronic Lyme" advocates are controversial. The symptoms are similar to those of fibromyalgia or chronic fatigue syndrome. Fibromyalgia can be triggered by an infection, and then persist when the infection is completely removed from the body. A few doctors attribute these symptoms to persistent infection with Borrelia, or co-infections with other tick-borne pathogens, such as Ehrlichia and Babesia. Some conclude that the initial infection may cause an autoimmune reaction that continues to cause serious symptoms even after the bacteria have been eliminated by antibiotics.
A review looked at several animal studies that found the persistence of live but disabled spirochetes following treatment of B. burgdorferi infection with antibiotics. The authors noted that none of the lingering spirochetes were associated with inflamed tissues and criticized the studies for not having adequately considered the different pharmacodynamics and pharmacokinetics of the antibiotics used to treat the animals in the trials versus what would be expected to be used to treat humans. The authors concluded, "There is no scientific evidence to support the hypothesis that such spirochetes, should they exist in humans, are the cause of post-Lyme disease syndrome."
Major U.S. medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health, have stated there is no convincing evidence that Borrelia is involved in the various symptoms classed as CLD, and particularly advise against long-term antibiotic treatment as it is ineffective and potentially harmful. Prolonged antibiotic therapy presents significant risks and can have dangerous, even deadly, side effects. Randomized placebo-controlled studies have shown that antibiotics offer no sustained benefit in people with chronic Lyme, with evidence of both placebo effects and significant adverse effects from such treatment. Many people who believe that they have chronic Lyme have fibromyalgia. Fibromyalgia can be difficult to treat, and antibiotics do not work at all for fibromyalgia. A pressure group called the International Lyme and Associated Diseases Society (ILADS) says that the persistence of B. burgdorferi may be responsible for manifestations of chronic Lyme disease symptoms.
False chronic Lyme disease diagnoses are frequently justified due to non-specific symptoms that are common in the population. Harriet Hall examined a long list of symptoms attributed to CLD and remarked that it "pretty much covers everyone." Consistent with this observation, a study found that a questionnaire of non-specific symptoms based on an ILADS symptom checklist could not distinguish between patients with possible post-Lyme symptoms and those with other conditions.
While many people who receive CLD diagnoses have unexplained symptoms (including chronic fatigue and fibromyalgia), others have well-defined diagnoses. Cases of cancer, a brain tumor, ALS, lupus, multiple sclerosis, a thyroid disorder, and mental disorders have each been misdiagnosed as CLD. Scientists from the Centers for Disease Control and Prevention (CDC) also documented life-threatening infections caused by unnecessary treatment with intravenous antibiotics and immunoglobulins. An adolescent girl and a woman were hospitalized for septic shock, with the woman eventually dying. Other patients developed Staphylococcus aureus and intractable C. difficile.
Identity Among people who self-identify as having chronic Lyme, the idea of chronic Lyme can function as a type of social identity. In this sense, the goal of the label is not to identify particular objective facts that differentiate one medical condition from another; instead, the main goal is to validate the real suffering experienced by people living with an invisible illness and to provide social support for them as they cope with it. To some patients, receiving a CLD diagnosis can provide a sense of relief and optimism for the future. They may also become dedicated to fighting for recognition of CLD.
Discredited beliefs Patients who receive a false chronic Lyme diagnosis are frequently told that they have other diagnoses that are not scientifically recognized. Infections may be diagnosed even without compatible symptom history, exposure in an endemic area, or credible positive test results. Some inappropriately diagnosed "co-infections" may be based on known tick-borne infections, such as Babesiosis or anaplasmosis. Others, like bartonellosis or mycoplasmosis, have not been shown to be tick-borne or commonly comorbid with chronic Lyme disease. Some may be told that they are being poisoned by mold. NIH physician Adriana Marques has noted that patients may also be told that they have "metabolic and hormonal imbalances, immune dysfunction, heavy metal toxicity, allergies, damage by toxins, mitochondrial dysfunction and enzyme deficiencies".
CLD advocates have also attempted to link Lyme disease to so-called Morgellons disease, another condition unrecognized by medical science. Morgellons—which is generally considered a form of delusional parasitosis—involves a persistent and pathologic belief that the skin is producing fibers. Among the top promoters of Morgellons is former ILADS president Raphael Stricker, who claims that CLD is causing the fibers to grow. In 2015, The Atlantic reported that Stricker treats people who believe they have Morgellons with long-term antibiotics.
A belief in one’s chronic Lyme disease is often reinforced by fallacious reasoning. For example, if a patient either feels better or feels worse after a treatment, it may be wrongly interpreted as evidence both that the diagnosis is appropriate and that the treatment is working. In the chronic Lyme world, a patient with worsening symptoms may be told that they are "herxing". The "herxing" claims are based on a real phenomenon called the Jarisch–Herxheimer reaction but often do not resemble it. True Jarisch–Herxheimer reactions are generally transient, mild, and found only within the first 24 hours of beginning antibiotics. In online Lyme groups, patients have claimed to "herx" long after initial antibiotic treatment for durations that can last weeks. A mistaken belief that a treatment is working can cause patients to ignore serious drug side effects of antibiotics or prevent diagnosis and treatment of other true causes of worsening symptoms.
If a patient improves while on treatment, experts warn that this also should not be interpreted as evidence of Lyme infection and that the treatment is working. Randomized controlled trials found that close to 40% of people with post-Lyme symptoms felt better while on placebo. An assumption that a treatment works can be reinforced because antibiotics can have anti-inflammatory effects, and many conditions naturally improve over time.
Political actions
While there is general agreement on the optimal treatment for Lyme disease, the existence of chronic Lyme is generally rejected because there is no evidence of its existence. Even among those who believe in it, there is no consensus over its prevalence, symptoms, diagnostic criteria, or treatment.Correspondence, "Reinfection versus Relapse in Lyme Disease" , New England Journal of Medicine, March 14, 2013. (This exchange of three letters nicely illustrates the controversy and some of the issues at stake.) The evidence-based perspective is exemplified by a 2007 review in The New England Journal of Medicine, which noted the diagnosis of chronic Lyme disease is used by a few physicians despite a lack of "reproducible or convincing scientific evidence", leading the authors to describe this diagnosis as "the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections." Medical authorities agree with this viewpoint: the Infectious Diseases Society of America (IDSA), the American Academy of Neurology, CDC, and the National Institutes of Health (NIH), advise against long-term antibiotic treatment for people who identify as having chronic Lyme disease, given the lack of supporting evidence and the potential for harmful side-effects including toxicities.
A minority, primarily not medical practitioners, holds that chronic Lyme disease is responsible for a range of unexplained symptoms, sometimes in people without any evidence of past infection. This viewpoint is promoted by many who have been told they have the condition by people who lack experience in science or medicine. Groups, advocates, and the small number of physicians who support the concept of chronic Lyme disease have organized to lobby for recognition of this diagnosis, as well as to argue for insurance coverage of long-term antibiotic therapy, which most insurers deny, as it is at odds with the guidelines of major medical organizations.