Local Lyme disease experts warn: Check early and often as climate change ushers in more tick bites
The Chicago area has had its share of wild weather extremes recently, from flooding and tornado warnings to deadly heat waves. Now, it’s time to add another threat of nature to your list of concerns: Lyme disease.
Spread by tick bites, Lyme disease cases are rising in the Chicago area. Changing weather patterns mean ticks are showing up earlier than usual, hanging around later into the year, and spreading to more counties in Illinois, according to the Great Lakes Natural Resources Defense Council (NRDC).
Nearly half a million people in the U.S. are diagnosed and treated for Lyme disease annually, the Centers for Disease Control and Prevention (CDC) estimates based on insurance records. Most people report flulike symptoms in the early weeks. Untreated Lyme disease can evolve into muscle and joint pain, headaches, heart damage, and cognitive issues. People can also experience severe cardiac, neurologic, and immune system dysfunction.
The symptoms are so vague and similar to other conditions, including Covid, that physicians dismiss many people with chronic Lyme disease, says Casey Kelley, MD, a Lyme disease specialist in Chicago and founder of Case Integrative Health.
Most people who live in the Chicago area realize Lyme disease happens locally, according to Becky Smith, DVM, PhD, associate professor of epidemiology at the University of Illinois College of Veterinary Medicine and health innovation professor at the Carle Illinois College of Medicine. “The difference is, they aren’t looking for ticks in December,” she says.
Prevention is key. With the weather warming year-round, experts remind everyone to take extra precautions much earlier and later in the year when enjoying the outdoors.
Smith is an expert in vector-borne diseases, and with her team of students created a map and survey of the types of ticks that thrive in the hotter, more rainy weather that Chicago and Illinois now experience regularly due to the changing climate.
The southern portion of the state has been hardest hit so far, with a new tick species, the Gulf Coast tick, moving up from the south. Ticks also now exist in at least 64 Illinois counties, compared to 51 in 1996, according to the Natural Resources Defense Council.
Even a simple walk with the dog in an urban park can lead to a tick bite, Smith says. “Wherever the deer and mice go, we find ticks,” she says. “Many people don’t realize we do find deer in Chicagoland parks.”
Heed the advice Smith keeps in her office, on a cross-stitch embroidery hoop: “Check your crevices!”
The Bartucci family, of suburban Park Ridge, has taken this advice very seriously since both daughters, Macala and Elyse, tested positive for Lyme disease in recent years. Macala, 19, who is a college dance major, developed chronic Lyme disease in high school.
Chronic Lyme disease is one of the most debated conditions in modern medicine. Some physicians don’t believe chronic Lyme disease exists. Others classify it as a range of physical and cognitive symptoms that persist after infection, for months or years. Testing confuses the issue because commonly, people test negative for Lyme disease but then show antibodies for it later. Many people turn to online support communities for those either diagnosed with or who believe they have chronic Lyme disease.
For Macala, in addition to fatigue, her initial symptoms included an itchy, red rash (not the common bullseye pattern that makes diagnosis more obvious), eye ulcers, and joint pain. As time went on, Macala says she would go to bed at 9 p.m. but never woke up feeling refreshed. “I would sleep so much during my high school years and always felt kind of cruddy,” she says. “I just thought this must be what puberty feels like.”
Her first Lyme disease test came back negative. Two years later, a more in-depth test showed she had the antibodies for B. burgdorferi, the bacteria that causes Lyme disease. Once she was finally diagnosed, Macala says she felt like she got her life back. She started antibiotic treatment, and her symptoms cleared up. Though, she continues to experience flare-ups. “I have been looking into information about Lyme flare-ups, and believe that this is something I have and will experience in the future,” she says.
Macala’s sister Elyse, meanwhile, didn’t realize a tick had bitten her when she developed a telltale bullseye rash on her leg after a church mission trip to Kentucky. A quick medical response and early antibiotics helped her avoid the chronic symptoms Macala endured.
Lyme disease specialist Kelley, who was diagnosed with Lyme disease after her residency, has devoted her career to helping people recover from this complex condition. She advises people with symptoms to self-advocate: Ask an integrative or functional medicine specialist to do a more in-depth Lyme testing panel if the standard test ordered from a walk-in clinic doesn’t yield enough information.
Macala agrees: She was not properly diagnosed for several years because her first Lyme test came back negative, so it’s possible she was also battling more than Lyme disease. Ticks can carry multiple infectious diseases in their saliva, people can experience multiple tick-borne infections simultaneously.
“We have half a million people in the U.S. diagnosed with Lyme disease every year, but how many others are walking around, who don’t even know?” Kelley says.
In her personal experience with Lyme disease, Kelley used herbal medicine, antibiotics, and IV therapies. When it comes to chronic Lyme disease treatment, it’s more accurate to describe the goal as remission, because a complete cure is not typical, Kelley says, adding, “My main goal is to find a way to help your immune system help itself. It can take years to unravel all of these symptoms. This is a marathon, not a sprint.”
7 tips for preventing Lyme disease:
- Before planning a long walk or hike, check with your local public health department to find out which ticks are common in your area, in which season.
- Always apply insect repellent before going out. The Environmental Protection Agency lists approved products.
- Wear a light-colored, long-sleeve shirt and long pants, tucked into socks.
- Check yourself, your hiking partner, and pets regularly after walks. Ticks seek out dark, moist parts of the body, including armpits, groin, and around the hairline.
- If you find an embedded tick, use tweezers to pull it up and out.
- Save the tick for potential testing.
- Ask your vet about tick and flea prevention for pets.