Infectious Diseases, March-April 2000
- "In North America, Lyme disease and endemic relapsing fever pose
greatest threat to human health and have received the most attention of
the borrelial diseases. Approximately 14,000 cases of Lyme disease are
reported in the United States each year; however, the actual number of
cases may be 10-fold higher (2)."
- "The findings in this report are subject to at least three
First, because LD is reported through passive surveillance, LD is
underreported, and the distribution and demographics of reported cases
could be biased. Second, LD is underreported in areas where disease is
endemic and might be overreported in areas where disease is nonendemic.
Third, not all LD patients present with typical manifestations; other
conditions might be confused with LD and laboratory testing might be
- "As with a majority of diseases reported through a passive
system, Lyme disease is underreported. Studies in Connecticut and Maryland
estimated 7--12 unreported cases for each reported case (20,21).
Additionally, the case definition has limitations of sensitivity and
MMWR May, 2004
- "Surveillance for LD is subject to several limitations. Studies from
early 1990s suggested that LD cases were underreported by six to 12-fold
in some areas where LD is endemic (2,3); the current degree of
underreporting for national data is unknown. In addition, differences in
the demographics of reported cases among states with above- and
below-average incidence suggest variation in diagnostic and reporting
practices among states. Clinicians are reminded that the LD case
definition was developed for surveillance purposes and might not be
appropriate for clinical management of individual patients (1)."
Website, November 2004
- "The overall incidence rate of reported cases in the U.S. is
approximately 7 per 100,000 population, but there is considerable
public health impact of Lyme disease in Maryland
- (Referenced in CDC publications)
"Results show that LD is underreported by 10- to 12-fold in
Email to LymeInfo Moderator from the CDC, February 2002:
"Thank you for your correspondence. Regarding...
percentage of Lyme patients who meet the "surveillance criteria" are not
reported? What percentage of patients are not accounted for according to
the criteria for surveillance? There are several issues here. Anecdotally
the CDC has stated that perhaps
only as many as one of every ten Lyme cases are reported. There may be
many factors that contribute to this situation: Some people may never
recognize their symptoms and do not seek medical attention, physicians may
not recognize the disease in some persons or may not fulfill all reporting
responsibilities, there may be cases not reported due to errors in the
state reporting system. Finally, if people do not meet the surveillance
criteria per se, but rather present with unidentified cases that do not
meet all the criteria the physicians do not report them. Physicians do not
report to the
state how many people partially meet the criteria, therefore there are not
accurate numbers to know how many people are thus described -- i.e. there
are no figures on how many others are seen in physician's practice who are
NOT reported, nor how many people do not seek medical attention. "
Surveillance, NOT Diagnosis
Lyme Disease 2008 Case Definition
"This surveillance case definition was developed for national reporting
of Lyme disease; it is not intended to be used in clinical diagnosis."
Lyme Disease Surveillance Case Definition (revised September
"This surveillance case definition was developed for national reporting of
Lyme disease; it is NOT appropriate for clinical diagnosis."
From the CDC case definition:
- "This surveillance case definition was developed for national
Lyme disease; it is not intended to be used in clinical diagnosis."
CDC Case Definitions for Infectious Conditions Under Public Health
- "The usefulness of public health surveillance data depends on its
uniformity, simplicity, and timeliness. The case definitions contained in
this report establish uniform criteria for disease reporting and should
not be used as the sole criteria for establishing clinical diagnoses,
determining the standard of care necessary for a particular patient,
setting guidelines for quality assurance, or providing standards for
reimbursement. Use of additional clinical, epidemiologic, and laboratory
data may enable a physician to diagnose a disease even though the formal
surveillance case definition may not be met."
Definition- NOT to be used for management of Lyme patients!
- Email to LymeInfo Moderator from the CDC, July 1999:
"Per your inquiry, CDC has no specific program dealing with "chronic" Lyme
disease. CDC Lyme disease program focuses on the surveillance,
epidemiology, prevention and control of Lyme disease, and does not have a
treatment protocol or guidelines on management of LD patients."
39% increase in Lyme cases in 2007 (pdf)
LDA analysis of 2007 CDC reported Lyme cases
January 2004 Testimony of Dr. Paul Mead of the CDC
On testing and more