Lyme Disease: Separating Fact From Myth

Do you know your child's risk of getting Lyme disease? It's time to separate truth from fiction about this confusing illness.
Christa Renee

In late 2013, Virginia Gambale's 8-year-old twins were diagnosed with Lyme disease, although each of them had very different signs and symptoms. Her son, Hagen, had a red rash on his back that was initially diagnosed as cellulitis, a common skin infection. He soon developed severe knee pain, sweats that would wake him up at night, and memory and concentration problems. "He'd say, 'Mom, I feel like I'm living in a fog!' " says Gambale, of Westport, Connecticut. Her daughter, Olivia, meanwhile, was experiencing pounding headaches and extreme rage. At first, Gambale figured Olivia was just going through a rude phase. Lyme disease had been on her radar because they live in an area where it's common, but like many parents, Gambale still harbored misconceptions about the disease's symptoms and natural course. "It can be very difficult to figure out what's going on because I found that a lot of physicians don't know how to identify Lyme," she explains.

A bacterial infection that's transmitted by black-legged ticks and named after the Connecticut town where an outbreak was first discovered, Lyme disease can be particularly hard to diagnose. The tiny deer ticks that carry it are hard to see, and you often don't even realize that your child has been bitten. "Most people who get Lyme disease never see a tick," says Eugene Shapiro, M.D., professor of pediatrics, epidemiology of microbial diseases, and investigative medicine at the Yale School of Medicine. And many of its signs and symptoms -- fever, fatigue, muscle and joint aches, and headaches -- are the same as those of many other illnesses.

Lyme disease has risen in recent decades. Some experts point to suburban sprawl and evolving weather patterns; humid weather creates an increase in suitable habitats for ticks. Roughly 300,000 cases are diagnosed in the U.S. every year, found studies conducted by the Centers for Disease Control and Prevention (CDC). That's about ten times higher than the numbers actually reported to the CDC by state health departments and the District of Columbia. Boys ages 5 to 9 make up the greatest number of reported cases, although no one can definitively explain why.

"People are afraid of Lyme disease, but they often think it's out of their control," explains Thomas Mather, Ph.D., director of the TickEncounter Resource Center and professor of public health and entomology at the University of Rhode Island in Kingston. It's not. In fact, many of the myths about the condition may be preventing you from sufficiently protecting your kids. We've debunked nine of the biggest ones here.

Myth #1: Lyme disease happens only in the Northeast U.S.

While the disease is most heavily concentrated throughout the Northeast and Midwest, there have also been thousands of cases diagnosed in California, Texas, and Florida. In fact, no state has been untouched by Lyme disease. This may be because the disease-carrying ticks have migrated, but people can also become infected with Lyme while visiting another state and then come home with the disease.

Myth #2: If it's Lyme disease, you'll see a bull's-eye rash.

Seventy to 80 percent of people who are infected with Lyme disease develop a red rash where they were bitten, three to 30 days later. But it may not be the bull's-eye kind we hear about; it can be an oval-shaped redness, says Leonard Sigal, M.D., a Lyme-disease expert and clinical professor of medicine and pediatrics at the Rutgers Robert Wood Johnson Medical School, in New Brunswick, New Jersey. Some children develop other signs of Lyme including fever, fatigue, chills and sweats, headaches, swollen lymph nodes, and muscle and joint aches. These symptoms can start a few days after the tick bite.

Myth #3: Your child is safe from Lyme if he avoids wooded areas.

"Most bites occur in backyards, especially if there are woods or wooded areas nearby," Dr. Shapiro says. You're not necessarily safe if you don't have deer in your area, either. Chipmunks, mice, and birds can all carry the types of ticks that transmit Lyme disease.

Experts recommend everyone, regardless of location, protect themselves from Lyme. Clear away tall grasses and brush from around your home and the edge of your lawn; place a 3-foot-wide barrier of wood chips or gravel between your yard and adjacent wooded areas; mow grass and rake leaves often; stack wood neatly in a dry area. You don't need to treat your lawn with pesticides; ticks reside in the leaf clutter at the edge of the woods.

Instead, use repellents containing permethrin on your child's clothing and shoes -- not on skin. (Permethrin remains on clothing through several washings.) "If a tick does latch on, it'll quickly fall off and die," says Dr. Mather. It's safe to use repellents that contain a 10 percent to 30 percent concentration of DEET directly on the skin of kids older than 2 months. If weather permits, have your child wear a long-sleeved shirt tucked into long pants, which are then tucked into socks. At the end of the day, have him strip, and dry his clothes on high heat for ten minutes before washing them. Examine your child naked (especially in the groin area, buttocks, armpits, and above the scalp line) for any new marks the size of freckles. That's how small deer ticks are.

Myth #4: Blood-test results for Lyme are reliable.

It's not unusual for kids and adults to get a negative test result shortly after becoming infected. "The body's immune system can take up to three to four weeks to mount a response by making antibodies," Dr. Sigal says. The CDC recommends a two-step blood-testing process -- an enzyme immunoassay followed by a "Western blot" test if the first step is positive or inconclusive -- to look for antibodies against the bacteria that cause Lyme disease. (The same blood sample can be used for both tests.) It takes three to four weeks after infection for the two-step test to be positive. If your child gets both tests, a false-positive result is less likely. However, if your child has the bull's-eye rash, she should start antibiotics right away, Dr. Sigal says.

Myth #5: A bite from an infected tick always leads to Lyme.

"If the tick is attached but not engorged with blood, the likelihood of getting Lyme is very low," says Dr. Sigal. While it isn't known what percentage of tick bites cause Lyme disease, in the Northeast and Upper Midwest areas of the U.S. up to 60 percent of adult black-legged ticks carry Lyme bacteria, and about 25 percent of nymphs (immature ticks) are infected, says Dr. Mather.

Myth #6: You can catch Lyme from your dog.

During a routine exam in 2011, our vet drew our dog Inky's blood to check for heartworm and other hidden infections. A few days later, we found out that Inky, an Akita mix, had Lyme disease. We were stunned: We'd never found a tick on him, he didn't have any obvious symptoms, and we don't often take him into tall grass or wooded areas. My two sons were worried about his health -- and whether they could catch it.

It is possible to catch Lyme disease from a pet, but only if an infected tick falls off your pet and manages to crawl onto you or a family member and then bite, explains Daniel Cameron, M.D., M.P.H., president of the International Lyme and Associated Diseases Society (ILADS). Even if your dog develops Lyme disease, like ours did, you can't catch the infection. Still, for your dog's sake, this is another good reason to use tick-control products on him.

Myth #7: Lyme disease is very hard to cure.

A two-to-four-week course of antibiotics cures Lyme disease in roughly 85 percent of cases if it's detected when you notice the rash or your child first has symptoms. But if the disease has been around long enough to affect the joints and/or trigger neurological symptoms like facial palsy (paralysis or weakness in the muscles on one side of the face), treatment may need to last longer. Still, it's true that some kids (and adults) who develop Lyme report lingering symptoms after the treatment ends. This was the case for Darlene McMahon's son Colin, who was diagnosed with Lyme disease when he was 5. "We didn't catch his symptoms early -- the test suggested he had been infected for at least a year," says McMahon, of Queensbury, New York.

The typical course of antibiotics wasn't enough to end the joint pain, fatigue, headaches, light sensitivity, and facial tics that were making him miserable. Colin, who turns 9 this month, was treated with a combination of two different antibiotics for nearly three years before he was symptom-free. After Colin's diagnosis, McMahon started the Children's Lyme Disease Network (childrenslymenetwork.org).

Even with treatment, a small percentage of people get what's called post-treatment Lyme disease syndrome (PTLDS), although it's less common in kids and Colin was never diagnosed with it. This includes ongoing fatigue, joint and muscle aches, sleep disturbances, and cognitive problems that can last six months or longer. The exact cause is not yet known, but many medical experts believe that it stems from residual damage to the body's tissues and immune system, even though there's no evidence of ongoing infection.

Doctors hotly debate the use of long-term antibiotic treatment for such lingering symptoms. Some are concerned that ongoing antibiotic therapy may cause unnecessary side effects (such as stomach upset, infections in the gut, and allergic reactions) and increase the chances that other infections will develop resistance to antibiotics, says Dr. Sigal. With time, PTLDS almost always goes away on its own, he adds. Remember, though: If another infected tick bites your child, he could get Lyme disease again.

Myth #8: Even when it's properly treated, Lyme disease can cause lasting neurological problems.

There's no solid evidence linking Lyme with autism and ADHD. But some of the neurological symptoms of Lyme disease can affect a child's behavior, concentration, memory, and thinking abilities, Dr. Sigal says. This is because infections trigger the release of inflammation-promoting proteins that can profoundly affect brain function. The good news is these symptoms go away when a child gets better, says Dr. Shapiro. In fact, a study from Austria found that in kids treated for neurological symptoms of Lyme disease, their intellectual skills and memory were back to normal within four months.

Myth #9: If your child is being tested for Lyme, she should be tested for all tick-related diseases.

It's true that some Lyme-carrying ticks can transmit several other diseases, which means that your child could get a double dose of illness from a bite (called a coinfection). Even so, doctors don't recommend testing for these other diseases as a matter of course, in part because coinfections are not very common.

After a few weeks of taking antibiotics, Virginia Gambale's twins, now 10, became symptom-free. But then last fall, Hagen's joint and muscle pain and Olivia's headaches returned with a vengeance. Both children were overcome with fatigue too. So Gambale took them back to the doctor, and blood tests soon revealed that the twins had also been infected with another tickborne bacterium. After being given stronger antibiotics, the kids finally feel well again.

Bug bites and stings happen all the time, so it's important to know how to care for your little one if she gets a bite. Here’s how to treat the most common types.

The Right Way to Remove a Tick

When an infected tick is removed within 24 to 36 hours, there's less chance of your child getting Lyme disease. Here's how to remove the bugger safely:

  1. Grasp it firmly from the side with pointy tweezers as close to the skin as possible and gently but firmly pull it out.
  2. Don't worry if part of the tick's mouth stays in the skin. It will fall out naturally.
  3. Keep the tick in a plastic bag and send a picture of it to TickSpotters (tickencounter.org/tickspotters) to find out what you could be at risk for. If a rash near the bite exceeds 2 inches, see a doctor.

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1 Comment

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