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Comparison of Lyme Disease Prevalence and Reporting in and Endemic Area

Campers stand at the edge of the water at sunset watching the stars come out, with the CanLyme logo floating in the foreground.


Lyme disease is the most commonly reported tick-borne illness in the United States; however, controversy
surrounding the diagnostic criteria has led to claims of both under-diagnosis and over-diagnosis of Lyme disease by
physicians. While both result in errors in estimating disease risk, under-reporting of Lyme disease to public health agencies
underestimates the risk and increases the disease burden on individuals and society. A population based cross-sectional study
was conducted to evaluate the rate of “Probable” Lyme disease diagnosed according to CDC criteria. Responses were
compared to electronic Lyme disease surveillance statistics. The survey had a response rate of 60% (n = 600). Two percent of
the survey respondents reported being diagnosed with Lyme disease according to CDC criteria for “Probable” Lyme disease,
which is significantly higher than the number of reported cases. Sixteen percent of undiagnosed survey respondents reported
subjective signs and symptoms consistent with “late-stage” Lyme disease. Thus, in a region endemic for Lyme disease, cases
are diagnosed by physicians more frequently than cases are reported. Additionally, a significant proportion of the study
population reported signs and symptoms consistent with late-stage Lyme disease. Together, these results indicate
underestimation of Lyme disease risk and an increase in public health burden for people living in endemic areas.

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