Only a small fraction of Connecticut primary-care physicians diagnose and treat chronic Lyme disease, while far more doctors believe the controversial condition does not exist, according to a survey of doctors published this month in The Journal of Pediatrics.
But more than half of the physicians who said they were undecided or did not believe chronic Lyme disease existed reported having patients who were diagnosed with it by other doctors.
Dr. Henry Feder, one of the study authors and a professor at the University of Connecticut Health Center, said the survey shows that treating Lyme disease as a chronic condition and using intravenous antibiotics for it is not the standard of care most doctors practice.
“The doctors who diagnose people who don’t feel well with chronic Lyme and treat for months to years are a very small number,” said Feder, who has written that chronic Lyme disease has no scientific basis. “We looked for them, and they’re not there.”
But advocates for patients with chronic Lyme disease disputed that conclusion. Dr. Harriet Kotsoris, medical advisor for Greenwich-based Time for Lyme, cautioned that the survey did not include specialists, such as rheumatologists, neurologists and infectious disease physicians, who see patients with chronic Lyme disease.
“People should not draw any firm conclusions and policy makers should not make any decisions based upon this survey,” Kotsoris said.
The existence of a chronic form of Lyme disease is a hotly contested topic among doctors and patients, particularly in Connecticut, where Lyme disease was first identified and which now has one of the highest rates of the tick-borne illness in the country.
Some patients and doctors believe Lyme disease can be a chronic condition that requires sustained treatment with antibiotics. But several mainstream medical groups and, according to the survey, many Connecticut doctors, have rejected that view.
Of the 285 doctors who responded to their survey, 6, or 2.1 percent, said they diagnosed and treated chronic Lyme disease. Another 137 doctors, or 48.1 percent, said they were undecided about the existence of the condition, while 142 doctors – 49.8 percent – said they believed chronic Lyme disease did not exist.
Despite differing views on chronic Lyme disease, the doctors in each group, on average, diagnosed similar numbers of non-chronic Lyme disease cases each year – between 11.4 and 12.4 per doctor – and treated them for 2 to 4 weeks.
The doctors who treated patients for chronic Lyme disease treated it with antibiotics for between 8 and 52 weeks, according to the survey.
In the article, Feder and coauthor Dr. Michael Johnson, wrote that the network of chronic Lyme disease advocates is influential, pushing for legislation requiring insurance companies to cover intravenous therapy and prompting the passage of a law in Connecticut prohibiting medical authorities from seeking to discipline any doctor using long-term antibiotic therapy for a patient diagnosed with Lyme disease.
Feder said he has treated patients with complications from chronic Lyme disease treatment, including gallbladder problems and blood clots from intravenous antibiotics. According to the survey, 159 of the 279 doctors who did not diagnose or treat chronic Lyme disease said other doctors had diagnosed it in many of their patients.
“Most physicians reported that their patients in whom chronic Lyme disease was diagnosed were not helped by the oral and intravenous antibiotics, and sometimes underlying diagnoses, such as depression and in one case leukemia, were missed,” Feder and Johnson wrote.
Noting the limits of the survey, Feder and Johnson wrote that although the surveys were sent to a random sample of primary-care physicians, the responses could reflect a sampling bias if doctors who treat chronic Lyme disease chose not to answer or if more doctors in one camp chose to respond. The survey had a 39 percent response rate.
Kotsoris said that because the incidence of chronic Lyme disease is lower than that of Lyme disease that can be treated in a short time, the experience of all doctors surveyed would likely be limited when it comes to chronic Lyme disease.
The number of doctors whose patients had been diagnosed by someone else, Kotsoris said, suggests that more doctors diagnose and treat the condition than the survey indicated.
Many patients diagnosed with chronic Lyme disease have described seeing multiple doctors before finding a diagnosis for their symptoms. Kotsoris said patients with the most complicated and severe cases end up seeing sub-specialists.
“If anything,” she said, “the survey may be doing a good job of revealing a lack of awareness of the complications of Lyme disease.”