‘These things are everywhere’: Experts and Lyme disease patients warn of tick season
For eight years, Streator resident Elizabeth Gillette experienced symptoms that her doctors could not explain. She sometimes forgot how old she was, had irregular heartbeats, and even got lost in the town she grew up in.
“I would pull over and I was like, ‘I don’t know where I am,’” said Gillette, who is 38. “And it was the most terrifying thing I have ever gone through.”
Finally, in 2020, Gillette was diagnosed with Lyme disease, a tick-borne illness. She said it took years of advocating for herself, reading medical journals and simply asking the neurologist who suspected she had multiple sclerosis to “humor me and test for Lyme disease.”
Gillette and her doctors traced everything to a tick bite she got in 2012 while mowing the lawn. Now, her family takes extra precautions when going outdoors and she advises others to do the same.
“Even still, people are like ‘Meh, it’s just a tick, I’m gonna just pull it off and go about my business,’” she said. “They don’t understand all the steps that you need to take and how bad Lyme disease really is.”
Tick season in Illinois
Lyme disease, transmitted by the blacklegged tick, is the most common tick-borne illness in the country and in Illinois. The majority of cases are reported from northeastern, upper Midwestern and mid-Atlantic states, according to the Centers for Disease Control.
But in recent decades, the range of tick species that are known to transmit disease has increased, putting residents in neighboring states like Illinois at higher risk for Lyme disease and other tick-borne illnesses.
In 2021, the Illinois Department of Public Health reported 540 cases of Lyme disease, almost triple the number of cases reported in 2011.
Tick season in Illinois begins when adult ticks are the most active, historically starting in April and going through July.
A common misconception about ticks and tick-borne illnesses is that it’s only a risk in rural areas. But Lincoln Park Zoo wildlife ecologist Maureen Murray wants Chicagoans to know you’re not completely safe in the city.
“We just want to make sure everyone knows that like, even though you live in a big city, you still have to be mindful that there could be ticks in green spaces,” she said.
Murray is part of a research team at the zoo’s Urban Wildlife Institute studying how urban sprawl affects the risk of tick-borne disease.
As part of their active tick surveillance program, researchers drag large cloths along trails to mimic humans or animals walking. Among the different areas the team has surveyed annually since 2019, Murray said the Burnham Wildlife Corridor along the lakefront is “an infamous site” for ticks and also Lyme-positive blacklegged ticks.
So far this season, Murray said they’re finding ticks in the parks and areas where they usually look, but it’s too early to say whether this year is different from previous ones.
Murray points to climate change as one factor that has led to an increase in ticks and tick-borne diseases in Illinois.
“Certainly with climate change, we’re going to see both like a geographic expansion of ticks into new areas, but then also sort of this seasonal expansion when ticks might be more active throughout the year,” she said.
According to the Illinois Department of Public Health’s tick surveillance program, blacklegged ticks have been reported in most of the state’s northern and central counties, which Murray said is an indicator of the ticks’ expanding west from their usual eastern U.S. range. Ticks like the Gulf Coast and lone star ticks, common in the southern U.S., have been found in some southern Illinois counties.
Climate change has shifted seasons, meaning an earlier spring for Illinois. Murray said this prolongs tick season, increasing human risk.
“Nobody wants to encounter ticks, except for (researchers) when we’re trying to get them,” Murray said.
It’s not just researchers who notice ticks in unexpected areas. Casey Kelley is a Chicago-based doctor who specializes in treating people with Lyme disease. Kelley said she’s seen patients who got tick bites from Lincoln Park Zoo, for example.
“These things are everywhere,” she said.
The complexities of Lyme disease
In recent years, Kelley has noticed an uptick in how many patients she’s seeing.
“We’re a specialty out-of-network clinic and we’re still getting anywhere from one to four (patients) a week,” she said. “So I’m sure urgent cares and primary care doctors are seeing a lot more of it.”
The complexity of Lyme disease also makes it hard to estimate how many people are affected in the United States. The CDC’s website states that its surveillance data on Lyme disease relies on reports from health care providers, leaving a lot of cases underreported.
In 2012, the CDC estimated that about 30,000 Americans get Lyme disease annually. Just a year later, it amended that number to 300,000. And most recently, a 2021 study estimated that as many as 476,000 Americans get Lyme disease annually, based on insurance records.
Kelley also sees a lot of patients with what’s called chronic Lyme disease, defined by the International Lyme and Associated Diseases Society as “a multisystem illness” as a result of an ongoing infection.
“It can be kind of tricky to parcel it out from other issues,” Kelley said. “No one’s really looking at the whole picture and connecting all those dots.”
Part of this is because the common symptoms of fatigue, memory loss, numbness, get interpreted as myriad other chronic illnesses like multiple sclerosis or fibromyalgia, like in Gillette’s case.
Not everyone diagnosed with Lyme disease experiences these long-term symptoms, but experts said it’s important to understand all the potential risks when it comes to tick bites.
Another obstacle is that primary care doctors are only taught about acute Lyme disease, Kelley said. A bull’s-eye rash around the tick bite area is a common sign.
“It’s not necessarily on the physician’s radar to look for chronic Lyme or other vector-borne infections as an underlying cause for some symptoms,” Kelley said.
The term “chronic Lyme disease” has its own controversy, too. The CDC refers to it as post-treatment Lyme disease syndrome, attributing symptoms like fatigue or brain fog to an immune response unrelated to the bacteria that causes Lyme disease.
And the National Institute of Allergy and Infectious Disease acknowledges that more research is needed to learn more about persistent infections after initial Lyme disease treatment. There is currently no standardized way to diagnose or treat PTLDS or chronic Lyme disease.
How to avoid tick bites
The Illinois Department of Public Health recommends avoiding areas with tall grass or shrubs, where ticks can brush against the body. But there’s always risks when golfing, gardening or even walking down DuSable Lake Shore Drive.
If you do go outside, doctors and experts recommend using bug repellent containing DEET. And if venturing into areas where ticks live, stick to the center of trails and wear long-sleeved clothing.
It’s important to check yourself — and pets — for ticks after being outside. Common places to check are in or around the hair, behind ears, between legs or behind the knees.
If you find a tick on your body, use tweezers to remove it, then clean the bite area. Monitor your health and see a doctor if experiencing a fever, skin rash or fatigue. Murray, the researcher, also recommends sending the tick to the IDPH tick surveillance program to contribute to their survey.
Building awareness
During the eight years she spent looking for answers to her health issues, Gillette decided to pursue a degree in holistic medicine. She graduated last year and recently opened a business, Arabella Remedies LLC, for people seeking natural remedies to chronic conditions.
“I went to school to find ways to help myself and started my business to help others looking for answers like I was,” Gillette said.
She’s also trying to educate people in Streator about ticks and the risks they come with. Even though Lyme disease has been detected in LaSalle County, Gillette said most people assume tick bites are not that serious.
“I was guilty of doing the same thing because no one really talks about Lyme disease and other tick-borne illnesses in our area,” she said.
Gillette wants people to understand how serious tick-borne diseases are. And for those with chronic illness, there’s hope.
“I was made to feel that I was crazy, depressed, that I had anxiety, that it was all in my head,” she said. “Keep looking for those doctors that will listen to you. Keep fighting.”
