Less than 3% of physician respondents in Connecticut reported diagnosing
and treating patients with chronic Lyme
disease, according to results of a study published in The Journal
The 285 survey respondents noted 11,970 cases of Lyme disease within the
past three years, which was about 14 cases per physician per year.
The respondents were placed into three groups.
Group 1 included physicians who diagnose and treat patients with chronic
Lyme disease (2.1%); group 2 consisted of physicians who are undecided on the
existence of chronic Lyme disease, but did not diagnose or treat any patients
with chronic Lyme disease (48.1%); and group 3 included physicians who question
the existence of the condition (49.8%).
Among the six physicians in group 1 who treated patients with chronic
Lyme disease, five treated the condition for less than 6 months and one
provided treatment for 12 months. No physicians reported the use of IV
antibiotics for chronic disease. An average of 20 weeks of therapy was reported
by the six physicians who reported treating chronic disease.
The average duration of antibiotic therapy was two to four weeks as
reported by all physicians who treated the disease.
The researchers noted that members of the International Lyme and
Associated Diseases Society (ILADS) — an organization that has dubbed
themselves “Lyme literate” and published their own guidelines about
long-term treatment of people with chronic Lyme disease, including long-term
use of antibiotics — influenced some of the survey results.
Many patients of the surveyed physicians had received a previous
diagnosis of chronic Lyme disease by another physician and had been prescribed
extended-course or IV antibiotics. This practice is in conflict with guidelines
recommended by many health care organizations, including the
Infectious Diseases Society of America and the
American Academy of Pediatrics.
The 1.5-page survey included questions regarding the physicians’
specialty (predominantly family physician, internist or pediatrician), the
number of patients diagnosed and treated with chronic Lyme disease in the last
three years, the length of antibiotic therapy used and opinions on the
existence of Lyme disease. There was also a space for further comments. The
survey was sent to more than 1,000 physicians and garnered a response rate of
The University of Connecticut institutional review board approved the
study. — by Rob Volansky
Chronic Lyme disease is an ill-defined entity that has been shown
not to exist. There are people who develop chronic, non-specific symptoms such
as pain, headache, or fatigue (from which they truly are suffering). However,
the overwhelming scientific evidence is that active or inadequately treated
Lyme disease does not cause these chronic symptoms; also, long-term antibiotic
treatment is not beneficial and has a number of adverse effects including cost,
potentially serious as well as less serious adverse side effects, selection of
antibiotic-resistant superbugs and the fact that the patient is not being
treated for the actual cause of their problems. Unfortunately, saying it is not
Lyme disease does not solve the problem of the patient who is suffering.
Doctors do need to improve on how we can help such patients, but long-term
antibiotics for Lyme disease are not the answer.
– Eugene D. Shapiro, MD
Infectious Diseases in Children Editorial Board member
Eighty-four, or 0.7%, of the 11,970 cases of Lyme disease reported by
the 285 physicians participating in this study were diagnosed with chronic Lyme
disease. The six physicians who diagnosed these 84 patients reported chronic
Lyme disease in one of every nine cases of Lyme disease that they diagnosed, a
rate about 16 times that of the entire group of 285 physicians. If chronic Lyme
disease were truly a real entity present in approximately 0.7% of diagnosed
Lyme disease patients, it would be expected that far more than 2% of physicians
should be diagnosing these patients. The most plausible explanation for this
discrepancy is that a few physicians are far more likely to provide a diagnosis
of chronic Lyme disease to patients with ill-defined chronic symptoms, and
those patients with such symptoms may gravitate towards these physicians. It
would be interesting to know the basis for these physicians' diagnosis of
chronic Lyme disease.
Furthermore, more than half of physicians reported seeing patients
diagnosed with chronic Lyme disease by other physicians. This suggests an even
greater misdistribution of diagnosing chronic Lyme disease than the 2% reported
in this study - a few physicians must be diagnosing tremendous numbers of
patients with chronic Lyme disease. Not surprisingly, given that three
double-blind, placebo-controlled trials sponsored by the NIH failed to show
efficacy of chronic antibiotic therapy, these patients were not helped by
chronic oral or intravenous antibiotics. Even more worrisome, some patients
with treatable or serious conditions were misdiagnosed as having chronic Lyme
disease. This is clearly not a benign state of affairs.
–Lyle R. Petersen, MD, MPH
Director, Division of Vector-borne Infectious Diseases, CDC