Only a very small number of physicians in Connecticut -- the epicenter of Lyme disease -- diagnose and treat patients with the controversial chronic form of this tick-borne infection, a survey found.
Among 285 primary care physicians surveyed, only about 2% treat chronic Lyme disease, and almost 50% don't believe that chronic infection with the spirochete Borrelia burgdorferi exists, Michael Johnson, MD, and Henry M. Feder, Jr., MD, of the University of Connecticut in Farmington, reported online in the Journal of Pediatrics.
The remaining 48% were uncertain as to whether chronic Lyme disease is a valid condition.
Advocates of chronic Lyme disease believe that the infection can persist for months and even years, requiring long-term treatment with oral or intravenous antibiotics -- a stance counter to the recommendations of the American College of Rheumatology, the American Academy of Pediatrics, the American College of Neurology, and the Infectious Diseases Society of America (IDSA).
They have formed their own society, the International Lyme and Associated Diseases Society (ILADS), publishing their own guidelines, and refer to themselves as "Lyme literate."
Unlike the more broadly accepted definition of Lyme disease, which includes erythema migrans as well as cardiac, neurologic, and arthritic findings, chronic Lyme disease has been defined by ILADS as being a debilitating illness with subjective symptoms such as fatigue, myalgias, arthralgias, poor concentration, and headaches.
To see how widespread acceptance of chronic Lyme disease is among clinicians in Connecticut, which has the highest incidence of B. burgdorferi infection in the country, Johnson and Feder sent a survey to a random sample of more than 1,000 physicians. The survey had a 39.1% response rate.
Responders estimated that within the past three years they had diagnosed 11,970 cases of Lyme disease, or 14 cases per physician each year.
The six responders who said they treat chronic Lyme disease reported having diagnosed a total of 84 chronic cases, or 4.7 per physician per year.
These six also each diagnosed an average of 11.5 cases of nonchronic Lyme disease per year (when an outlier who diagnosed 100 or more cases each year was excluded).
All physicians reported treating Lyme disease with antibiotics for two to four weeks, and the six who treated chronic Lyme disease used oral antibiotics for an average of 20 weeks.
Responders who diagnose and treat chronic Lyme disease in this survey were not representative of the "Lyme literate" community, however, in that none used intravenous antibiotics, and only one treated for as long as a year.
But the Lyme literate community did have an impact on the survey responders, the authors noted, because many said their patients had previously been diagnosed by other physicians as having the chronic condition and had received intravenous or extended-course antibiotics.
Most of the responders also said that they did not believe patients had been helped by the lengthy and costly treatment, and that underlying conditions such as depression -- and in one case, leukemia -- had been overlooked.
In discussing their findings, Johnson and Feder noted that the number of Lyme literate physicians in Connecticut and elsewhere in the northeast is small but influential.
"The 'Lyme literate' network has been pivotal in advocating legislation in multiple states requiring insurance companies to cover the costs of intravenous therapy for presumed chronic Lyme disease," they wrote.
In fact, after the IDSA published an update of its guidelines on treatment in 2006, in which they argued against the long-term use of antibiotics, the attorney general of Connecticut initiated action against IDSA, claiming that the guideline authors had conflicts of interest.
Finally, in April 2010, an independent review panel convened by the attorney general and IDSA voted that no changes need be made to the 2006 guidelines.
In the meantime, however, the Connecticut House of Representatives passed legislation protecting physicians who diagnose and treat chronic Lyme disease from disciplinary actions.
The survey authors noted that their study could have been limited by sampling and recall bias, and that there was significant geographic variation in case numbers throughout the state.
Disclosures
Both authors declared no conflicts of interest.
Primary Source
Journal of Pediatrics
Johnson M, Feder H "Chronic Lyme disease: a survey of Connecticut primary care physicians" J Pediatr 2010; DOI: 10.1016/j.jpeds.2010.06.031.