How many patients do not meet the CDC criteria for Lyme disease?

In a recent article published in Open Forum Infectious Disease, Kobayashi and colleagues suggest that Lyme disease is often mistakenly diagnosed as causing various illnesses, which has led to the unnecessary use of antibiotics. The authors conducted a retrospective study of patients with possible Lyme disease, who were referred to an infectious disease clinic in Maryland between 2000 and 2013. ¹

Kobayashi and colleagues concluded that nearly 3 out of 4 patients referred to the clinic did not have Lyme disease using the CDC criteria for Lyme disease. They did not interview the referring doctor at Johns Hopkins University School of Medicine. Instead, they conducted a chart review.

However, to be included in the study, patients had to meet the Infectious Diseases Society of America’s (IDSA) guidelines or the CDC criteria for Lyme disease?

The authors found that out of 1,261 patients, all but one were symptomatic when they presented to the clinic, with a median duration of complaints of 558 days, ranging from 1 day to 51 years.

“The 5 most commonly identified symptoms were arthralgia (71.3%), fatigue/malaise (66.8%), headache (42.1%), myalgia (40.8%), and sleep disturbance (34.3%),” writes Kobayashi.

Only a few patients had abnormal physical findings. “The 5 most common abnormal physical findings were rash other than erythema migrans (6.6%), joint swelling (5.9%), tender points (3%), objective sensory abnormality (2.1%), and motor weakness (1.5%),” the authors explain.

The researchers did not report a number of clinical presentations that can occur in Lyme disease, including:

  1. Lyme encephalopathy [2]
  2. Lyme neuropathy [2]
  3. Neuropsychiatric Lyme disease [3]
  4. Pediatric neuropsychiatric disorders – PANS [4]
  5. Lyme carditis [5]
  6. Autonomic dysfunction – POTS [6]
  7. Post-treatment Lyme fatigue – Post-Lyme disease [7]
  8. Neuropathic pain [8]
  9. Persistent symptoms after Lyme disease [9]
  10. Lyme disease with co-infection e.g. Babesia [10]

It may be that many physicians do not recognize or document these types of manifestations, given that the authors didn’t mention any of these presentations .

Approximately 1 in 10 patients had a history of co-infections. “Although 139 (11%) co-infections were diagnosed before evaluation at the infectious diseases clinic, none of these infections were confirmed or treated based upon the evaluations performed in this study,” writes Kobayashi.

“Of these 139 putative co-infections, 61 (44%) were said to be caused by Babesia microti or B. duncani, 40 (29%) by Epstein-Barr virus, 30 (22%) by Bartonella, 11 (8%) by Ehrlichia spp., and 32 (23%) were attributed to other infectious agents,” writes Kobayashi.

  1. Takaaki Kobayashi, Yvonne Higgins, Roger Samuels, Aurasch Moaven, Abanti Sanyal, Gayane Yenokyan, Paul M Lantos, Michael T Melia, Paul G Auwaerter, Misdiagnosis of Lyme Disease With Unnecessary Antimicrobial Treatment Characterizes Patients Referred to an Academic Infectious Diseases Clinic, Open Forum Infectious Diseases, Volume 6, Issue 7, July 2019.
  2. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
  3. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
  4. Sigra S, Hesselmark E, Bejerot S. Treatment of PANDAS and PANS: a systematic review. Neurosci Biobehav Rev. 2018;86:51-65.
  5. Muehlenbachs A, Bollweg BC, Schulz TJ, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. 2016.
  6. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiology journal. 2011;18(1):63-66.
  7. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
  8. Simons LE. Fear of pain in children and adolescents with neuropathic pain and complex regional pain syndrome. Pain. 2016;157 Suppl 1:S90-97.
  9. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001;345(2):85-92.
  10. Krause PJ, Telford SR, 3rd, Spielman A, et al. Concurrent Lyme disease and babesiosis. Evidence for increased severity and duration of illness. Jama. 1996;275(21):1657-1660.

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