The incidence of Lyme disease is increasing, parents are panicked about potentially dangerous consequences -- and the medical community is intensifying its efforts to understand this perplexing illness.
Why Is Lyme Disease on the Rise?
When 7-year-old Tristan Carey found a tiny bug crawling on his stomach, he flicked it away and never thought to mention it. Nor did he tell his parents when he developed a circular rash on his groin.
Luckily, the rash happened to be there on the day of his annual checkup -- and his pediatrician recognized this classic sign of Lyme disease, a bacterial infection that's transmitted by ticks. Chances are, the bug Tristan saw crawling away had bitten him a few days before and had just finished a nice, long meal. "Tristan wasn't acting sick, and since that's not a spot I usually check, I would never have suspected anything," says his mother, Heather.
The Careys live in Fairfield, Connecticut, less than 60 miles from the town of Lyme, where the disease was first identified in the 1970s. Because Tristan got diagnosed early and took antibiotics, he didn't develop more serious symptoms like arthritis, but his mom knows her family might not be so lucky next time. "Now I always check my three kids for ticks and rashes from top to bottom."
Since 1992, the number of cases of Lyme disease reported annually to the Centers for Disease Control and Prevention (CDC) has more than doubled. There were more than 23,300 reported cases in 2005, but studies estimate that the actual number may be anywhere from three to 12 times higher because doctors don't always report patients to their state health departments, says Barbara Johnson, PhD, chief of the CDC's microbiology laboratory in Fort Collins, Colorado. And since the disease can cause a wide variety of different symptoms, it is often misdiagnosed.
Summertime is the peak season for Lyme disease, and kids are at particularly high risk because they tend to play in wooded and grassy areas, where ticks live. The disease has been reported in all 50 states, but 95 percent of the reports come from the Northeast, upper Midwest, and California. "Cases are reported by state of residence, not by state of acquisition," says Dr. Johnson. In other words, if a child from Utah gets Lyme disease on vacation in Massachusetts, it will cause a statistical blip in Utah, even though the ticks there don't carry the bacterium.
If you live in a town where others have gotten Lyme disease, you're probably already a little paranoid about ticks. There are actually hundreds of types of ticks, but Lyme is only transmitted by two species of black-legged ticks that are known as deer ticks because deer often carry them from place to place. However, these ticks also hitch a ride on mice and other small animals, and that's where they pick up the bacterium, called Borrelia burgdorferi, which causes Lyme disease. Fortunately, Lyme disease doesn't spread from person to person, but a child can catch it more than once.
Young deer ticks, known as nymphs, cause most of the infections, partly because they're so small and hard to spot. A nymph is about the size of a poppy seed, and an adult is the size of a sesame seed. Hungry ticks often wait on blades of grass and try to grab on to an animal or a person who brushes up against them. A bite is painless, but a tick can cling to your child's skin -- feeding on the nutrients in her bloodstream -- for several days. However, even if your child gets bitten, she won't necessarily get Lyme disease, since only 10 to 30 percent of these black-legged ticks actually carry the bacteria, says John Brownstein, PhD, an epidemiologist at Harvard Medical School. And a tick usually needs to be attached for at least 36 to 48 hours before it can transmit the bacteria. If you remove it before then -- by grasping it with tweezers and pulling it straight out -- it is very unlikely that your child will become infected.
The hallmark symptom of Lyme disease is a rash called erythema migrans (EM) that appears at the site of the tick bite within about a month. It can be as small as a dime or as wide as your child's entire back, and it's often found on the thighs, groin, trunk, or armpits. While the rash is often described as looking like a bull's-eye -- with a red ring that expands outward from a clear area in the center -- it's actually more common for the rash to be uniformly red, says Eugene Shapiro, MD, professor of pediatrics at Yale University School of Medicine. About 20 percent of people develop a rash in more than one spot, which is a sign that the bacteria have already spread into the bloodstream.
Unfortunately, anywhere from 10 to 65 percent of people with Lyme disease don't recall getting the telltale EM rash, says Brian Fallon, MD, director of the new Lyme Disease Research Center at Columbia University. It's hard to nail down an exact number because some people who get a rash never notice it -- since it's not itchy or painful and might be on a hidden spot like the scalp -- or the rash may get misdiagnosed as something else. Some kids with Lyme disease get flulike symptoms. When Jake Behr, of Bethlehem Township, New Jersey, became sick with a headache and fever, his doctor initially diagnosed the 8-year-old with an ear infection. It wasn't until his parents saw a rash on his shoulder and called the doctor back that the doctor realized Jake had Lyme disease.
If the infection isn't diagnosed and treated with antibiotics, more than half of patients will eventually develop Lyme arthritis -- painful and swollen knee joints -- which can become chronic in up to 20 percent of cases, according to the National Institutes of Health. "This bacterium tends to attach itself to tissues, including nerves and brain tissue, rather than staying in the bloodstream," explains Dr. Fallon. A child with Lyme disease can have neurologic symptoms such as temporary paralysis of facial nerve muscles (Bell's palsy), a stiff neck, numbness, mood swings, and extreme fatigue. "Some kids may even appear to have ADHD because they can't pay attention in class -- and they'll only get diagnosed with Lyme disease and treated with antibiotics once they develop a more typical symptom like joint pain or nerve palsy," says Dr. Fallon.
Lyme disease is also a difficult diagnosis because blood tests alone aren't very reliable; they frequently have false-positive or false-negative results. The tests can only detect antibodies that your child has made (recently or in the past) in reaction to the bacteria, not the actual bacteria. Since the body doesn't produce measurable levels of antibodies until two to four weeks after a tick bite, tests will be negative if they're done too soon. On the other hand, if your child has an "off-the-charts" test result, that doesn't necessarily mean he has a very bad case of Lyme, says Dr. Fallon. "High antibody levels could just show that he has a strong immune system that's fighting off a present infection or has fought one in the past."
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.
Don't Panic, Take Precautions
Of course, there are plenty of pediatricians who fall somewhere in the middle of these two warring camps, and they use their best judgment to treat their patients or refer them to specialists when necessary. What no one disputes, however: It's best to keep children from getting Lyme disease in the first place. Since there's no vaccine, you should take steps to avoid ticks if you live in a high-risk area. As a parent, you'll probably roll your eyes when you read the usual advice: Dress your kids in long-sleeved shirts with pants tucked into their socks whenever they play outdoors, even in the heat of summer. "It's not very practical -- plus there's the nerd factor," admits Dr. Johnson. Fortunately, there are other effective strategies that won't overheat your child or ruin his social standing in the neighborhood.
- Clear away fallen leaves in your yard, where ticks thrive, and mow the grass frequently.
- If you have a swing set or play structure, move it to a sunny area away from trees and shrubs.
- Keep your pets out of the woods, if possible, and talk to your vet about tick repellents. Although there are Lyme vaccines for dogs, being vaccinated won't keep dogs from bringing ticks indoors.
- Choose an insect repellent with DEET, and check the label to be sure the product is formulated to repel ticks. High concentrations seem to work best against ticks, but the American Academy of Pediatrics advises against using a formula with more than 30 percent DEET on children.
- Avoid dressing kids in open-toed shoes or sandals. Traditionally, experts have also suggested wearing light-colored clothing so it's easier to spot ticks, but one study found that ticks are more attracted to light colors, so the jury's out on that advice.
- Use products containing permethrin, such as Permanone, only on clothes, not skin. Let the spray dry completely before putting the treated clothing on your child. One application stays effective through several washings.
- Remove ticks from your child's clothes outside. Any ticks that you might have missed will be killed by washing clothes and drying them in a hot dryer.
- Finally, check your child carefully in the bath or shower, and remove any ticks immediately. (Don't bother saving a tick; few doctors are able to identify different types, and experts say that sending the bug to a specialist isn't worthwhile.) To make head checks easier, use a hair dryer on cool to blow the hair away from the scalp so you can see the skin. Says Dr. Johnson, "It's a drag to look for ticks, but I encourage people who live in an area where Lyme disease is common to do it at least once a day."
Ticks on the Move
"There's no doubt that we're going to see an increase in Lyme disease every year," says Harvard epidemiologist Dr. John Brownstein. Why? Growing populations of deer play a role, but it's possible that birds are also distributing ticks over a wider territory. Building new homes in forested areas also puts residents at risk. Global warming could even be causing ticks to spread to different parts of the country because they're sensitive to temperature.
Top 10 Lyme Disease States
- Rhode Island
- New Jersey
- New York
- New Hampshire
Copyright © 2007. Reprinted with permission from the July 2007 issue of Parents magazine.