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Lyme disease is the most commonly reported tick-borne disease in the United States and Europe. Lyme disease was first recognized clinically in 1977 as "Lyme arthritis" during studies of a cluster of children in Connecticut who were thought to have juvenile rheumatoid arthritis. A total of 252,681 confirmed cases of Lyme disease were reported in the United States from 2010 to 2019. As with other diseases, not all cases of Lyme disease are captured through routine surveillance. Reporting practices vary by location, and underreporting of cases is common. One study suggests that approximately 476,000 people are diagnosed and treated for Lyme disease in the United States each year.
Over the past several years, many celebrities have come forward to state that they have “chronic lyme disease”. But is this a real entity or is it a convenient reason to explain chronic nonspecific symptoms of depression, a viral infection, or just feeling lousy? Before we tackle this topic, there are four points that must be noted:
The rash associated with Lyme disease, called erythema migrans (EM), appears at the site of the tick bite, usually within 7 to 14 days after the bite (range 3 to 30 days). EM occurs in approximately 80 percent of patients. This means that 20 percent do not get a rash.
The diagnosis of Lyme disease is a clinical diagnosis. It is not a laboratory diagnosis made by a blood test. The diagnosis of Lyme disease should be suspected in patients who are at risk of exposure to ticks carrying Lyme disease and have clinical manifestations that are consistent with Lyme disease. Once Lyme disease is suspected, the approach to diagnosis depends upon the stage of disease.
At the time of a tick bite, serologic testing should not be obtained to establish a new diagnosis of B. burgdorferi (the spirochete present in the tick) infection because antibodies to the spirochete would not yet have appeared. Antibodies against Lyme disease bacteria usually take a few weeks to develop, so tests performed before this time may be negative even if the person is infected.
Ticks can be infected with bacteria, viruses, or parasites. Some of the most common tick-borne diseases in the United States include: Lyme disease, babesiosis, ehrlichiosis, Rocky Mountain Spotted Fever, anaplasmosis, Southern Tick-Associated Rash Illness, Tick-Borne Relapsing Fever, and tularemia. There are many more unclassified infections that have been described.
POST-TREATMENT LYME DISEASE SYNDROME AND CHRONIC LYME DISEASE
Some patients have persistent, nonspecific symptoms after recommended antibiotic therapy for Lyme disease, referred to as post-treatment or chronic Lyme disease. This differs from those who present with late-stage disease and develop persistent arthritis after the completion of antibiotic therapy. The term "post-treatment Lyme disease syndrome" is often used to describe nonspecific symptoms that may persist for months after treatment of Lyme disease. These symptoms often resemble a viral syndrome and include: fatigue, anorexia, muscle aches, joint aches, or headaches. Fever occurs infrquently and the presence of upper respiratory or gastrointestinal signs suggest a viral cause. For the majority of patients, these symptoms improve gradually over six months to one year. The proportion of patients who develop post-treatment Lyme disease syndrome ranges from 5 to 15 percent.
The Infectious Diseases Society of America (IDSA) proposed a definition of post-treatment Lyme disease syndrome in 2006. Criteria for this syndrome include a prior history of Lyme disease treated with an accepted regimen and resolution or stabilization of the objective manifestations of Lyme disease. In addition, the onset of subjective symptoms (eg, fatigue, widespread musculoskeletal pain, complaints of cognitive difficulties) must have occurred within six months of the diagnosis of Lyme disease and persist (continuously or relapsing) for at least six months after completion of antimicrobial therapy. There is also an extensive list of exclusion criteria.
The cause of persistent, nonspecific symptoms after treatment for Lyme disease remains an area of uncertainty. Although there are data from animal models that suggest components of B. burgdorferi can persist after antibiotic therapy, a link to persistent symptoms in humans has not been established. In addition, available evidence does not support the hypothesis that persistent infection with B. burgdorferi is the cause of chronic subjective symptoms that may occur after recommended courses of antibiotic therapy for Lyme disease, since there are several double-blind studies that found no sustained difference between antibiotic and placebo-treated groups.
Chronic Lyme disease is a term that is used by some practitioners and patient advocacy groups. This term has not been clearly defined and can include post-treatment Lyme disease syndrome, as well as illnesses and symptom complexes for which there is no convincing scientific evidence of any relationship to B. burgdorferi infection. Many of these patients have other recognizable syndromes or diagnoses. In one case series, for example, three patients who were diagnosed as having chronic Lyme disease had an underlying cancer. Among patients with nonspecific symptoms of fatigue and myalgias, these subjective symptoms are sometimes accompanied by tender points of fibromyalgia. Since fibromyalgia is common in the general population, the association of Lyme disease and fibromyalgia may sometimes be by chance alone.
The take home message is that just because a doctor “told you” that you must have had Lyme disease in the past is meaningless and not helpful. If you never had the clinical manifestations that are necessary to make the diagnosis of Lyme disease, the sudden appearance of the nonspecific symptoms does not mean that you now have chronic lyme disease. However, nonspecific symptoms (such as headache, fatigue, and arthralgias) may persist for months after treatment of “real” Lyme disease. This is uncommon and most patients get better. There is no evidence that these persistent subjective complaints represent ongoing active infection or that repeated or prolonged courses of antibiotics provide any benefit.
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