With the incidence of Lyme disease increasing and parents panicking about potentially dangerous consequences, the medical community is intensifying its efforts to understand this perplexing illness. However, Lyme has also become incredibly controversial -- and two opposing groups of doctors disagree vehemently about how difficult it is to cure and whether it can become a long-term problem.
According to members of the Infectious Diseases Society of America (IDSA), most cases of Lyme are caught early and easily treated with oral antibiotics for 10 days to four weeks. "Treatment with antibiotics is highly effective at eliminating the infection," says Dr. Shapiro, who helped write the IDSA's recently updated Lyme disease guidelines for physicians. On the other side of the fence are doctors who belong to the International Lyme and Associated Diseases Society (ILADS) and patient-advocacy groups such as the Lyme Disease Association. While they agree that children who are diagnosed early can be cured with antibiotics, they recommend treatment for a longer period of time -- four to six weeks -- in order to eradicate the bacteria. But the ILADS doctors also insist that lots of cases don't get caught right away. "Many children with Lyme don't get the EM rash, so 40 to 65 percent of them receive a late diagnosis or no diagnosis, and they can go on to have all sorts of chronic or recurring symptoms,' says Raphael Stricker, MD, president of ILADS and medical director of Union Square Medical Associates, in San Francisco. Indeed, many parents worry that their child's strange or vague complaints are related to a past case of Lyme disease that they assumed had been cured.
IDSA says that a child who has arthritis or other signs of a more advanced case might need a second round of oral antibiotics. They recommend IV antibiotics only for more serious symptoms, such as meningitis, heart problems, and some neurologic disorders. However, ILADS doctors frequently prescribe oral or IV antibiotics for months or even years for kids who relapse.
Emily Lantz, now 10, is one of them. Although she never had a rash and doesn't remember a tick bite, her mother, Lori, says that she's been sick since she was 5. Her symptoms have included double vision, mood swings, and severe fatigue and confusion. "Everything else was ruled out, but her Lyme disease test was definitely positive," says Lantz, of Trappe, Maryland. Emily has been receiving daily IV antibiotics for more than a year, to the tune of about $50 a day. "When we tried stopping the treatments, her symptoms came right back in three days," says Lantz. Since insurance companies often won't pay for extended antibiotics -- because they're not accepted as the standard of care outlined by the IDSA -- the family has turned to their church and fund-raisers to help cover the cost.
While mainstream doctors acknowledge that a small percentage of people have symptoms that remain after treatment, they prefer to call the problems "post-Lyme syndrome," based on the belief that the symptoms are caused by something other than an ongoing bacterial infection, such as lingering inflammation. They believe that continued antibiotics don't necessarily help, and may even be harmful for kids -- increasing the risk of antibiotic-resistant bacteria and possibly causing side effects such as gallstones or problems with IV catheters. In fact, since blood tests aren't very effective, these doctors claim it's often debatable whether people diagnosed with chronic Lyme disease ever had the disease in the first place. Sometimes, patients turn out to have another illness altogether that affects the immune system or nerves, such as fibromyalgia or juvenile arthritis.
Proponents of long-term antibiotics disagree strongly with this view. "In 2007, a child who is diagnosed with Lyme disease and is getting better with treatment should be able to continue treatment until her symptoms are resolved if the doctor thinks it is necessary," says Pat Smith, president of the Lyme Disease Association. (The association gives $1,000 grants to families with no insurance for diagnosis and treatment.) However, long-term treatment has become so controversial that some state medical boards are even trying to revoke the medical licenses of certain treating doctors. The Lyme Disease Association has developed a doctor-referral link on its Web site that provides limited access to physicians, since the doctors generally don't want their names listed openly online.