Few Connecticut primary care physicians diagnose, treat chronic Lyme disease

Johnson M. J Pediatr. 2010. doi:10.1016/j.jpeds.2010.06.031)

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 of Pediatrics.

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 39.1%.

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

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