Paper - The Consequence of Underdiagnosing and Undertreating Lyme Disease: The Lyme Disease Surveillance Database Study

Cameron DJ, Glushanok G, McCoy K. Mt. Kisco, New York, USA, board member, International Lyme and Associated Diseases Society (ILADS)

Background: Recent recommendations focused on avoiding overdiagnosis and overtreatment of Lyme disease. The consequences of underdiagnosing and undertreating Lyme disease have not been adequately assessed.

Study design: A Lyme Disease Surveillance Database was used to identify 100 consecutively evaluated Lyme disease patients from 1997 to 2001 confirmed with a positive IgG Western blot subset of the Centers for Disease Control and Prevention (CDC) two-tier serologic criteria.

Results: Treatment was delayed for 34 of the 100 Lyme disease patients, 21 (62%) due to the physician alone, 11 (32%) due to the patient alone, and 2 (6%) due to both the physician and patient. The mean treatment delays for physicians and patients were 2.2 years and 6 months respectively, p = .016. Delays in treatment were significantly associated with poor outcome of initial treatment for physician delay (52% vs 15%, p < .001) and a trend toward a poor outcome for patient delay (27% vs 15%, NS). The higher failure rate for physician delay than patient delay (52% vs 27%) could have been explained by the more – than - 2 year physician delay.

The diagnosis of Lyme disease was associated with objective findings in half of the delayed patients including erythema migrans, disseminated erythema migrans, Bell’s palsy, and arthritis of the knee. Other patients were inappropriately diagnosed with shoulder pain, streptococcal infection, sinus infection, and Epstein Barr syndrome. In addition, unnecessary investigations were often carried out that resulted in delays of treatment for Lyme disease. The study could not address the degree of physicians’ concern with overdiagnosis and overtreatment and the degree of patients’ delaying treatment to avoid a label of “Lyme anxiety”.

Conclusions: Lyme disease patients in this sample were significantly underdiagnosed and undertreated. The present findings emphasize that timely treatment of chronic Lyme disease is crucial for outcome. Physicians are encouraged to become involved in initiatives to reduce underdiagnosis and undertreatment.