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What You Need to Know About Lyme Disease

family outside in park

Barbara Schroeder wasn't overly concerned when her daughter Julia, then 2, spiked a fever for a few days. "She said her head and body ached, and she slept a lot, but kids get viruses," Schroeder says. Julia improved, but then months later her knees became so swollen and inflamed she could barely walk. Because the family lives in York, Pennsylvania, an area with a high incidence of Lyme disease, a bacterial infection that's spread by certain ticks, Julia's pediatrician gave her a blood test for it. The test was negative, yet Julia's knees continued to ache, throb, and swell every few months. When she was 4, doctors believed she had juvenile rheumatoid arthritis. "But Julia didn't have the classic symptoms of juvenile rheumatoid arthritis," says Schroeder, who decided to take Julia to another doctor for more testing. By this time, she was 6, and the results left no doubt: Julia had Lyme disease.

"I never saw a tick or a rash," says Schroeder, referring to the reddish, bull's-eye-shaped rash called erythema migrans that's an initial telltale sign of the disease. But not all Lyme sufferers develop a rash -- and diagnostic tests for the disease aren't always reliable. In fact, Lyme is plagued with ambiguities.

No one's sure exactly how many people get infected with Lyme disease each year, though experts agree rates are going up. For decades, the Centers for Disease Control and Prevention (CDC) counted only confirmed cases of Lyme, but in 2008 broadened its criteria to include probable cases. As a result, the incidence of Lyme in adults and children skyrocketed 77 percent from 19,931 cases in 2006 to 35,198 cases in 2008. Even then, the actual number of people being treated for Lyme may be up to 10 percent higher. Doctors don't always report patients to their state health department, perhaps because diagnosis is so problematic. Lyme disease has become more of a problem over the years because the number of ticks, and the deer they feed on, have been increasing. Knowing which ticks cause problems -- and which symptoms to watch for -- is key to keeping your child healthy.

Ticks To Look Out For
There are more than 800 species. But only black-legged ticks in the Northeast and upper Midwestern black-legged ticks along the Pacific carry the Lyme bacteria, called Borrelia burgdorferi, which they secrete into a child's bloodstream when they bite. Both kinds of black-legged ticks are commonly called deer ticks because they hitch rides and feed on deer; but they also feast on small animals like mice, which is where they tend to pick up Lyme bacteria. Your child's odds of being bitten by a Lyme carrier depend on where you live and where you visit. Half of the deer ticks in high-risk states (Connecticut, Delaware, Maryland, Massachusetts, Minnesota, New Jersey, New York, Pennsylvania, Rhode Island, and Wisconsin) are infected with Lyme, compared with only 2 to 4 percent in Pacific states like California and Oregon. Very few black-legged ticks in the South are Lyme carriers because the bacterial infection isn't as widespread among mice in the region. Lyme-carrying ticks are most active in May, June, and July, according to the CDC, though you can get Lyme year-round.

Unfortunately, the ticks most likely to spread Lyme are incredibly hard to spot. Adult female deer ticks are red and black and about the size of an apple seed; males are black and a bit smaller. But during their nymph stage (what we might consider the teen years), they are brownish and tiny -- about the size of a poppy seed or a pinhead. "I tell parents to look for 'freckles' or 'moles' that weren't on their kids before -- that's how small these ticks are," says Penelope Dennehy, M.D., director of pediatric infectious diseases at the Hasbro Children's Hospital's Pediatric Lyme Disease Clinic, in Providence.

family lying down in the grass

Children ages 5 to 13 are at particularly high risk for tick bites because they play outside so much. While ticks prefer densely wooded and bushy areas with tall grass, most kids and adults get bitten by a tick when they're playing or doing other activities like gardening right near their home. Always check your child from head to toe after she's been in an area known to have deer ticks, not forgetting spots like the groin, navel, armpits, ears, nape of neck, and scalp. If you find a tick, grasp its head (not the body) with fine-tipped tweezers, steadily pull it straight out, and then clean the area with soap and water. (If you spot one in that tiny nymph stage, you'll probably need a magnifying glass to even find the head.) Don't be alarmed if the mouth parts remain in the skin; once they're detached from the rest of the tick, they can no longer transmit bacteria. Throw the dead tick away, and try not to panic: Most experts say that a tick needs to be attached to the skin for 36 to 48 hours before it transmits Lyme bacteria. Still, it's a good idea to monitor your child for Lyme-disease symptoms.

Warning Signs of Lyme Disease
That circular bull's-eye rash is often the first sign of Lyme infection, but up to 30 percent of kids who get infected are rash-free. Because Lyme bacteria travel quickly through the bloodstream, the rash may not necessarily appear at the site of a tick bite. What's more, a rash can develop up to 30 days after a bite, so parents may not connect it to an earlier tick encounter, or they may mistake it for a spider bite.

With Lyme disease, misdiagnosis can be life-altering. "Untreated, the infection can injure a child's brain, nerves, heart, liver, eyes, muscles, and joints," says Paul Auwaerter, M.D., clinical director of the division of infectious diseases at Johns Hopkins University School of Medicine, in Baltimore. Because Julia Schroeder's Lyme disease wasn't treated for four years, the 8-year-old is now among the 25 percent of patients who have what's known as Lyme arthritis, a condition that causes joints to become inflamed and painful. Unfortunately, she has also recently developed tics and headaches. Julia can do gymnastics, swim, and participate in other activities "in short bursts" if she first takes ibuprofen. Most Lyme-induced joint and neurological problems improve with antibiotics if treatment starts early in the course of the illness.

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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