Are You in a Lyme Disease Hotspot? Here's How to Keep Your Family Safe This Summer

Lyme disease is an infection that is transmitted when an infected tick bites a human. The Centers for Disease Control and Prevention (CDC) estimates that nearly 500,000 people in the United States get Lyme disease each year, and experts say that number will continue to rise.

Some of those cases are of acute Lyme disease. In those instances, patients typically find relief after taking antibiotics. Others may be diagnosed (often after extended periods of time experiencing “mystery symptoms”) with chronic Lyme disease, which can leave them in pain for years to come.

There are ways to prevent, identify, and treat Lyme disease, but there are also misconceptions. That’s why SheKnows sat down with experts in the field to find out how you and your family can work to stay safe from Lyme and other tick-borne illnesses this summer.

As always, if you have additional questions or any concerns, contact your child’s pediatrician or your primary care doctor. And as with any medical concerns, remember it’s always OK (and often necessary, as many chronic Lyme patients will tell you) to get multiple opinions.

• Where Are The Hot Spots?

  

  You’ve probably heard that the majority of cases of Lyme disease are found in the Northeast. I mean, it was discovered in Lyme, Connecticut after all. But it’s not only found there.

  It’s also common in the Upper Midwest in states like Wisconsin, Minnesota, and Illinois. There has also been an increase along the West Coast —especially in northern California — and in Southern states like Virginia, West Virginia, and North Carolina. 

  “However, it’s a dangerous assumption to make that just because you don’t live in one of these states that you are safe from tick-borne disease,” Dr. Casey Kelley, MD, ABoIM — a family physician with a specialty in tick-borne disease and a director on the board of the International Lyme and Associated Disease Society (ILADS) — tells SheKnows. “Lyme disease has been found in all 50 states.”

  Unfortunately, Lyme disease cases are on the rise across the country because rising temperatures have lengthened tick season.

• When Is Peak Season?

  

  You’ll be shocked (not!) to hear that climate change has had a big impact on ticks and Lyme disease. Lyme disease is often thought of as a summertime illness, but peak time is now longer than that, spanning from April-October. 

  “Ticks can’t survive in extremely cold and snowy winters, however, spring and summer are starting earlier and ending later,” Dr. Kelley says. “This increases the amount of time ticks are active, and the amount of time we’re likely to be spending outside.”

• What Are Preventative Measures?

  

  If you’re feeling understandably on edge right now, remember that the fear of Lyme and other tick-borne illnesses should not keep you and your family indoors.

  “I always like to remind my patients (and anyone) that it’s essential to get outside and soak up all that Vitamin D!” Dr. Kelley says. “There are many preventative measures we can take to ensure that we can still enjoy the beautiful outdoors while staying safe.”

  Applying an EPA-registered tick repellent on clothes and insect repellent on the skin is effective but not the only line of defense. You’ll also want to wear long pants and long sleeves. And we know that sounds like an uphill battle with your kids — especially in the hottest months — but it really is good practice to cover up for hiking, camping, and similar activities. Bonus points for wearing light colors which will make ticks easier to spot! Once you tuck your pants into your socks, tie back long hair, and pop on a hat, you’re ready to hit the trail. Emphasis on trail.  

  Monica Embers, PhD, director of vector-borne disease research at Tulane University, was one of many experts featured in I’m Not Crazy, I’m Sick, a new documentary on Amazon Prime Video that explores chronic Lyme disease. Embers says that ticks like moist leaf litter and grasses. Meaning that if you stumble upon a road diverged in a yellow wood, it’s probably best to forgo Frost. Take the road more traveled, where the foliage is well-maintained, and where ticks are less likely to be hiding out.

  “It’s important to stay on paths when hiking, to keep yards free of tall grasses, and to create a barrier between the yard and wooded areas,” Embers says.

• What Happens Next?

  

  Once you return from your outdoor adventures, it’s time for a tick check. An important part of a tick check that people overlook is addressing the clothes they were wearing. Dr. Sunja Schweig, MD, founder of the Functional Medicine Research and Technology Center — a nonprofit aiming to prevent and reverse chronic diseases including tick-borne illnesses — tells SheKnows that people should put their clothes in the dryer for 15 minutes on high heat: “This will kill any ticks that may cling to your clothes.”

  Everyone should then look all over their bodies (a buddy system and/or a handheld mirror is helpful) for ticks. Don’t forget to look under the arms, in and around the ears, behind the knees, and in the hair. Remember that ticks can be small — like, really small. They’re often compared to the size of a sesame seed, so Dr. Schweig says to be on the lookout for new “freckles.”

  Hopefully, everything looks status quo, but if not, it’s time to immediately grab tweezers or another tick removal tool.

  “Remember to grasp the tick firmly and pull it straight out,” Dr. Schweig says.

  Embers then tells people to save the tick they’ve just removed (a sealed bag or jar should do the trick). If their healthcare provider is familiar with ticks, this can help them determine what might have been transmitted.

  “There are also tick-testing services that can help identify any pathogens in the obnoxious blood-sucking arthropod,” she says.

• What Are Common Symptoms?

  

  The first thing most people think of is that tell-tale bullseye-shaped rash. And while that can be a symptom, it’s not as common as you might think. In fact, Dr. Schweig says less than half of all patients develop a bullseye.

  “When there is a rash present, the rash can be extremely variable depending on age, skin tone, race, and other factors,” he says.

  Other common symptoms include muscle or joint pain or swelling, fever, fatigue, headaches, and/or other flu-like symptoms. 

  Embers says children are at the highest risk of contracting Lyme, and it makes sense if they are spending so much time outside during the summer and jumping into piles of leaves in the fall. It’s common for children to suffer from joint pain, fatigue, and fever. Dr. Kelley says it may also present as acute behavior changes and outbursts. Which of course is tough to diagnose as a symptom of an illness. Because, well, kids have outbursts.

  But Embers says it’s important to take these symptoms very seriously. “If untreated, complicated neurological manifestations can ensue.”

   

• How Is Lyme Diagnosed?

  

  Dr. Kelley says diagnosing Lyme can be a “tricky business.” There are tests available, but the tests are not always accurate. It’s also tough because Lyme disease can “mimic” other conditions. As we said, it can sometimes present like the flu. As time goes on, a blood test — “ideally a Western Blot which is thought to be the most sensitive” — may be able to identify Lyme.

  “If caught early, most cases of Lyme disease can be treated,” Dr. Schweig says, “but Lyme is commonly misdiagnosed due to a lack of awareness and unreliable diagnostic tests.”

  When it comes to chronic Lyme disease, Dr. Kelley says it’s a “complex issue” that requires “medical detective work and time to unravel.” Because remember, it can present differently in everyone. And so she recommends finding a Lyme-trained provider (you can find lists here and here) who are able to “dig deep into each of your symptoms, parse out the patterns and connections, and develop solutions that build you back from the foundation up.”

  As viewers see in I’m Not Crazy, I’m Sick, a huge part of getting diagnosed with Lyme is being able to advocate for yourself or your loved ones — and finding a doctor who will listen and act.

  “Parents know their children better than healthcare providers,” Embers says, “and if they are not receiving access to the necessary laboratory and clinical tests that would aid in the diagnosis, they should seek a second opinion. Given the disagreement over Lyme disease in the medical community, parents might need to consult specialists in infectious diseases and tick-borne diseases.”

• How Is It Treated?

  

  Early on, antibiotics may do the trick for patients suffering from acute Lyme disease. But it will come as no surprise that there is no straightforward answer for how to treat such a complex disease that often goes undiagnosed for long periods of time. But research is ongoing, especially as cases continue to rise.

  “Unfortunately, there is still a great deal of disagreement in the medical community on treating Lyme disease, so we need more research to find a regimen that is safe and effective for all patients,” Embers says.

  At the premiere of I’m Not Crazy, I’m Sick, Paul Ross, chairman of the Global Lyme Alliance (GLA) spoke about new findings and developments surrounding treatments. GLA recently funded a study at Tufts University that has not been published yet, but that looks at the impact of using ozone as a treatment method. 

  “There are many people out there who use ozone and will tell patients that it does everything, ‘It kills this, it kills that,’” he said. “We’re not going to tell you that’s what it does. But we can confirm that it does reduce inflammation. So [for] patients who experience benefits from that, there’s a really legitimate scientific reason for that.”

  As for preventative treatment, several companies are working on vaccines. “This was once considered a small market for vaccines, but given the increased prevalence, some pharmaceutical companies now have an interest in vaccine development,” Embers tells us. Pfizer and Valneva are working on vaccines and are currently in Phase III clinical trials. If all goes well, it could be available in the next couple of years. In April, Moderna announced plans to develop a Lyme disease vaccine of their own.

  “[The Pfizer and Valneva vaccine] will require booster shots,” Ember says, “but for those who have a high risk of exposure, this vaccine could be a game-changer.”

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