AUGUSTA, Maine — A bill that pitted a vocal group of Lyme disease advocates against the medical mainstream was approved Friday by the state Legislature.
The bill, LD 597, requires the Maine Center for Disease Control and Prevention, the state’s official source of public health information, to include on its website information about “alternatives” for the treatment of Lyme disease. The legislation passed in the House on Wednesday and in the Senate on Thursday and now heads to Gov. Paul LePage’s desk for his signature.
“I think it’s a huge gain for the Lyme community,” said Lisa Jordan, whose 12-year-old daughter, Sally, suffered memory problems and other painful symptoms for several years from the disease.
As it was originally written, the bill directed the Maine CDC to link to treatment guidelines for Lyme recommended by the International Lyme and Associated Diseases Society, a group that supports use of antibiotics over months and sometimes years to treat persistent or “chronic” cases of Lyme.
The U.S. CDC and most doctors, however, rely on the guidelines of the Infectious Disease Society of America, one of the nation’s largest medical organizations, in diagnosing and treating Lyme disease. Those guidelines don’t recognize chronic Lyme as a condition or support long-term antibiotic treatment for the disease.
The amended version of the bill that lawmakers ultimately supported dropped the requirement that the Maine CDC website link to the International Lyme and Associated Diseases Society, instead requiring the Maine CDC site to include information about Lyme advocacy groups and other medical sources.
Sheila Pinette, director of the Maine CDC, couldn’t immediately be reached for comment Friday.
Many Lyme patients and some doctors believe the disease is far more prevalent than most physicians recognize and that it can linger in the body after treatment with antibiotics. Doctors’ rigid view of the disease prevents many Lyme suffers from proper diagnosis and causes avoidable suffering, they say.
Most Lyme disease experts, on the other hand, argue that the disease has become a convenient diagnosis for a wide range of health complaints. Some call long-term antibiotic therapy harmful and unwarranted.
Sponsored by Rep. Sheryl Briggs, D-Mexico, the original bill also would have required health care providers who order a lab test for Lyme disease to inform patients that a negative test may not definitively mean that Lyme bacteria isn’t present in the body. Lyme advocates said the requirement would ensure that patients are fully informed about their test results, while some doctors described it as an intrusion into their practice of medicine.
The amended bill instead requires doctors to provide patients with a copy of their lab results, which typically explain the reliability of the test.
Lyme cases have risen in Maine in recent years, now appearing in all 16 counties, and the state recorded an all-time high of about 1,100 cases of the disease in 2012. Lyme disease is transmitted by the bite of the eight-legged deer tick.