Getting Diagnosed and Cured
However, as the Schroeders learned, getting a diagnosis is no easy feat. Most doctors base diagnoses on patient complaints, physical symptoms, and whether the child's been in an area with infected ticks. Blood tests check for antibodies that your child has developed in response to Lyme bacteria -- not for the actual bacteria itself. The most commonly ordered test, an enzyme-linked immunoassay, or ELISA, can commonly give false-positive results (as well as false-negative results, particularly when the patient has been given an early course of antibiotics). Doctors rely on a second antibody test, a Western blot, to weed out the false positives, but there's usually no follow-up test for kids whose first test is negative. And since Lyme-fighting antibodies can stay in a child's system for years, no test can determine when the infection is gone.
Curing Lyme Disease with Antibiotics Because Lyme disease is caused by a bacterial infection much like strep throat or a urinary-tract infection, 95 percent of kids are cured with a two- to four-week course of oral antibiotics. But if the disease goes undiagnosed for too long or is not cured by the antibiotics, treatment becomes more challenging -- and sometimes controversial.
At the core of the controversy are conflicting medical opinions about the long-term effects of Lyme disease and its treatment. It's become a battle between two outspoken groups of doctors. Members of the International Lyme and Associated Diseases Society (ILADS) agree that antibiotics do the trick for most kids with early-diagnosed Lyme. However, they're more concerned about the children whose symptoms appear to persist even after treatment, a condition they call chronic Lyme disease. Doctors who follow ILADS' guidelines say chronic Lyme sufferers may need to take antibiotics for months -- sometimes years -- before improving. "When the bacteria affect the central nervous system, an area of the body that oral antibiotics don't reach well, it's more effective to use intravenous ones," says Daniel Cameron, M.D., immediate past president of ILADS and a physician in Mount Kisco, New York.
But guidelines established in 2006 by members of the Infectious Diseases Society of America (IDSA) advise against long-term antibiotic treatment. "Research suggests that many so-called chronic Lyme problems are likely caused by conditions unrelated to Lyme disease. Even if symptoms persist after a patient is treated for Lyme infection, additional months of antibiotics won't help," says Dr. Auwaerter, who serves as a spokesperson for IDSA. Indeed, a study published in the Annals of Internal Medicine found that more than half of chronic Lyme patients actually had a different treatable disorder like rheumatoid arthritis, bursitis, or myasthenia gravis. And a New England Journal of Medicine study showed that patients with confirmed cases of Lyme disease whose symptoms persisted after routine antibiotic treatment fared no better after an additional 90 days of drugs than those who took a placebo.
IDSA's guidelines were reviewed by an expert panel this spring and declared "medically and scientifically justified." They are also widely accepted by organizations like the CDC and many insurance companies -- a fact that's raised the ire of certain doctors, as well as Lyme patients and their families. This includes the Belval family of Malvern, Pennsylvania. All three of the children -- 6-year-old twins, Brett and Ryan, and 3-year-old Lucy -- have been taking oral antibiotics for more than a year. Their mom, Megan, says the medicine is the only thing that helps their Lyme disease -- induced fatigue, headaches, insomnia, and joint and muscle pain. "They finally all sleep through the night and wake up happy, like healthy kids," she says. So far, the Belvals' insurance company has paid for the drugs, but not everyone is as lucky. Many insurers cite medical studies, along with IDSA's guidelines, as the reason they won't cover long-term Lyme treatment.
Dodging the Disease One thing no one disputes: It's best to keep your child from getting Lyme disease in the first place. If you're in a high-risk area, dress her in light-colored clothing (so ticks can be spotted), including long-sleeved shirts tucked into pants, which are tucked into socks; closed-toed shoes; and a hat. If your kids won't go for this during the hot summer months, spray insect repellent containing 30 percent DEET on their exposed skin. (Don't use DEET products on the hands or face, or on children younger than 2 months of age, and use it only once a day.) Treat clothes, shoes, and hats with permethrin, a repellent that kills ticks on contact. It lasts for two to six weeks even after washings, and experts say it will bind to the fabric, so it shouldn't rub off on your child's skin. Remove her clothes as soon as she's done playing outside and spin them in the dryer on high for an hour to kill any lingering ticks.
If you remove a tick from your child, check her all over for rashes for the next 30 days. Unfortunately, you don't develop immunity to Lyme bacteria the way you can to other disease-causing germs, which means children can get Lyme disease every time they're bitten by an infected tick. Keeping an eye out for these parasites is essential for your child's health, especially when she's been in an area that's rife with Lyme.
Originally published in the July 2010 issue of Parents magazine.
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