Lyme Misdiagnosis: A Serious Problem

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“In seven studies conducted in endemic areas, comprising a total of 1902 patients referred for suspected Lyme disease, 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.”

Source: Lantos, Paul “Chronic Lyme disease: the controversies and the science” Expert Rev. Anti Infect. Ther. 9(7), 787–797 (2011)

Results of 1261 patients who visited Johns Hopkins for presumptive Lyme disease from 2000 to 2013: 72% had no Lyme disease, but 84% of the patients with no Lyme disease received unnecessary antibiotics

So what is causing the symptoms of “chronic Lyme” patients?

The CDC and NIH emphasize that experts do not support the use of the term “chronic Lyme disease” because of confusion. Writing in the New England Journal of Medicine, 31 doctors and scientists classified those with the chronic Lyme label into four predominant groups:

  • Category 1: Symptoms of unknown cause, with no evidence of Borrelia burgdorferi infection
  • Category 2: A well-defined illness unrelated to B. burgdorferi infection
  • Category 3: Symptoms of unknown cause, with antibodies against B. burgdorferi but no history of objective clinical findings that are consistent with Lyme disease
  • Category 4: Post–Lyme disease syndrome

Feder et al observed “Only patients with category 4 disease have post–Lyme disease symptoms.” Looking at references 31-33 below, Feder et al stated:

Data from studies of patients who underwent reevaluation at academic medical centers suggest that the majority of patients presumed to have chronic Lyme disease have category 1 or 2 disease.

In other words, evidence indicates that the symptoms of most “chronic Lyme” patients were clearly not caused by Lyme disease. In addition, most “chronic Lyme” stories contain a number of red flags of quackery, including multiple false diagnoses.

References pointing to a massive problem of false positive diagnosis of Lyme disease:

🧒 = Focusing on children and young people


References from Figure 1 :

31. 🇺🇸 Reid MC, et al. The consequences of overdiagnosis and overtreatment of Lyme disease: an observational study. Ann. Intern. Med. 128(5), 354–362 (1998). (Commentary: Overdiagnosis and overtreatment of Lyme disease leads to inappropriate health service use)

32. 🇺🇸 Sigal LH. Summary of the first 100 patients seen at a Lyme disease referral center. Am. J. Med. 88(6), 577–581 (1990).

33. 🇺🇸 Steere AC, et al. The overdiagnosis of Lyme disease. JAMA 269(14), 1812–1816 (1993).

34. 🇺🇸 Hassett AL, et al. Psychiatric comorbidity and other psychological factors in patients with “chronic Lyme disease”. Am. J. Med. 122(9), 843–850 (2009).

35. 🇺🇸 🧒 Qureshi MZ, et al. Overdiagnosis and overtreatment of Lyme disease in children. Pediatr. Infect. Dis. J. 21(1), 12–14 (2002).

36. 🇺🇸 🧒 Rose CD, et al. The overdiagnosis of Lyme disease in children residing in an endemic area. Clin. Pediatr. (Phila.) 33(11), 663–668 (1994).

37. 🇩🇪 Djukic M, et al. The diagnostic spectrum in patients with suspected chronic Lyme neuroborreliosis – the experience from one year of a university hospital’s Lyme neuroborreliosis outpatients clinic. Eur. J. Neurol. 18(4), 547–555 (2010).

38. 🇨🇦 Burdge DR, O’Hanlon DP. Experience at a referral center for patients with suspected Lyme disease in an area of nonendemicity: first 65 patients. Clin. Infect. Dis. 16(4), 558–560 (1993)

Untreated Late Lyme Disease

In the United States, the typical manifestation of Lyme disease that is untreated for months or longer involves Lyme arthritis. In this stage, antibody tests are expected to be positive.

See also: LymeScience’s infographic on Lyme arthritis

According to Steere and Arvikar:

Patients with Lyme arthritis have intermittent or persistent attacks of joint swelling and pain in one or a few large joints, especially the knee, usually over a period of several years, without prominent systemic manifestations.

Swollen knee is a typical symptom of late stage Lyme disease, source: CDC

In Europe, a skin manifestation called acrodermatitis chronica atrophicans can occur in late stage Lyme infection.

References on Untreated Late Lyme

Arvikar SL, Steere AC. Diagnosis and treatment of Lyme arthritis. Infect Dis Clin North Am. 2015.

Schoen RT. A case revealing the natural history of untreated Lyme disease. Nat Rev Rheumatol. 2011.

Brummitt SI, et al. Molecular Characterization of Borrelia burgdorferi from Case of Autochthonous Lyme Arthritis. Emerg Infect Dis. 2014.

Washington Post: Medical Mysteries: Nurse solves mysterious ailment that puzzled orthopedists, oncologist

New York Times: My Son Got Lyme Disease. He’s Totally Fine

Hirsch AG, et al. Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study. BMJ Open. 2018.

Steere AC, Schoen RT, Taylor E. The clinical evolution of Lyme arthritis. Ann Intern Med. 1987.

European specific

Mahieu R, et al. A 59-year-old woman with chronic skin lesions of the leg. (photo quiz and article) Clin Infect Dis. 2013;57(12):1751, 1782.

Moniuszko-malinowska A, et al. Acrodermatitis chronica atrophicans: various faces of the late form of Lyme borreliosis. Postepy Dermatol Alergol. 2018;35(5):490-494.

updated August 31, 2023