Editor’s Note: This is the first in a series of stories about news and events happening in and around the Shawnee National Forest in southern Illinois.
MURPHYSBORO — Amanda Allen Hall meticulously plans every meal. She avoids restaurants. Spending time outdoors requires careful consideration — a painful reality for the former hiking enthusiast since she developed alpha-gal syndrome eight years ago. A mere step outside leaves her at risk of an anaphylactic reaction, as the threat and population of ticks increases in her own backyard.
The little-known condition that changed the 45-year-old Murphysboro resident's life traces back to a 2018 hike in Wears Valley, Tennessee. During the hike, she felt a sharp sting on her leg. It was a lone star tick bite that would eventually lead to her diagnosis.
"It's a whole mess," Hall said of the condition, which can trigger severe allergic reactions to red meat. "I'd never dreamed 20 years ago that I'd be dealing with something like this."
As tick populations expand across the Midwest, a phenomenon scientists attribute to climate change, concerns about tick-borne illnesses are growing. That’s especially true in southern Illinois, home to the Shawnee National Forest, where outdoor recreation and work are a way of life for many.
Illinois is among the top 13 states seeing a rise in alpha-gal syndrome cases caused by a bite from the lone star tick, with residents living in southern Illinois at the highest risk, according to a 2025 study by the University of Illinois Urbana-Champaign.
“We don't have enough long-term data about the population of ticks, but we do know that the number of tick-borne diseases is increasing," said Rebecca Smith, a pathobiology professor at the University of Illinois who led the Centers for Disease Control-funded study published in the September edition of the scientific journal “Ticks and Tick-borne Diseases.”
The CDC estimates at least 450,000 Americans may be affected, with more than 110,000 suspected cases reported from 2010 to 2022. The CDC estimated at least 90 cases across every southern Illinois county, though that’s likely an undercount. (A spokesperson for the Illinois Department of Public Health said the agency does not have data on alpha-gal syndrome because they don’t track the number of positive cases, unlike Lyme disease and Rocky Mountain spotted fever.)
Smith said many doctors still overlook alpha-gal syndrome when their patients present with common allergic symptoms, and said more education and better tracking are needed to fully understand the scope of the problem.
"We are seeing an increased reporting of alpha-gal, but we're also having to inform the medical professionals that it exists and that there is a test for it,” Smith said. “So it might be that it's increasing because we're getting better at diagnosing it, and we're getting people more aware of it, but also, we think that the ticks are moving.”
Illinois lawmakers have sought to improve data collection on alpha-gal syndrome. Last August, Gov. JB Pritzker signed the Tracking Infectious Cases Knowledgeably Act, or TICK Act, into law, expanding on earlier efforts around Lyme disease. It requires healthcare providers to report new alpha-gal syndrome diagnoses to local health departments, which then submit the data to the Illinois Department of Public Health. It also directs IDPH to launch a statewide public awareness campaign and publish annual data on the condition.
Alpha-gal is a sugar found in most mammals, excluding humans. When the sugar enters the bloodstream through a lone star tick bite, the body's immune system can begin treating it as a threat. As a result, people with alpha-gal syndrome may experience allergic reactions after consuming red meat and other mammal-derived products, such as dairy, medication containing gelatin products, some skin-care and household products. Even receiving heart valves from pigs or cows can trigger some people with the syndrome. Consuming chicken and fish is fine.
Reactions tend to occur between two and 10 hours after a person consumes a mammalian product, which can make it difficult to determine the cause.
Symptoms vary widely. Some experience mild discomfort. Hives, flushing, nausea and diarrhea are common. On the extreme end, the reactions can be life-threatening, as with other common food allergies like peanuts.
For Hall, just the smell of red meat cooking nearby can trigger an anaphylactic reaction. It has altered her life. For many years, Hall drove semi-trucks with her husband, John. Now, she tends to mostly stay close to home, fearing how her body will react on the road if she inadvertently triggers an allergic reaction.
One mother’s fight for awareness of tick-borne illnesses
Efforts to improve education and tracking around tick-borne diseases stem from one mother’s long and frustrating fight to get answers for her sick daughter.
In 2012, Jennifer Russell of Aledo heard the school bus drop off her daughter, Lauryn, but she never came inside. When Russell walked outside, she found her lying in the driveway. Lauryn told her that her legs just stopped working.
For the next three years, the family searched for answers. Lauryn slept 12 to 16 hours a day, frequently became ill and lost much of her short-term memory. Doctors initially suspected leukemia.
“It was a very difficult time,” Russell said.
After three years, Lauryn developed three bullseye rashes in her armpits.
“We were told that Lyme disease wasn't in Illinois,” she said. “And then our dog got Lyme disease. So, that was how we finally got doctors to take it seriously.”
Russell said it took four years for her daughter to regain her health. The experience led her to found the Illinois Lyme Association, which advocates for people living with tick-borne illnesses. Her advocacy work landed her in the office of State Rep. Dan Swanson, R-Alpha.
“There's nothing like the passion of a mother with a sick child,” Swanson said. “We've passed several pieces of legislation together as quite a team.”
On Jan. 1, 2019, the Lauryn Russell Lyme Disease Prevention and Protection Act went into effect. It also created the statewide Lyme Disease Task Force. Through the task force, the pair has developed educational materials that it has provided to IDPH, and hosted conferences to educate medical professionals on tick-borne illnesses and prevention
Then, last year, Swanson, whose mother also has alpha-gal syndrome, expanded on those efforts, this newest law targeting alpha-gal syndrome.
The Saluki Local Reporting Lab reached out to IDPH, which said it was in the process of developing educational materials for its website. It recently posted flyers online describing alpha-gal syndrome, how to avoid it and how to manage symptoms. Additionally IDPH has posted trail-head signage at popular hiking spots in southern Illinois warning hikers of tick exposure in collaboration with the Illinois Lyme Association.
A little-known condition, even among doctors
While scientists say alpha-gal syndrome is on the rise, many doctors still aren’t aware of it. Hall spent years searching for answers.
She said that when she first questioned her doctor in Tennessee about it, he told her he’d never heard of the condition. After moving from Tennessee to Murphysboro, she continued experiencing severe allergic reactions. Doctors struggled to identify the cause. At first she cut out gluten, thinking she was intolerant. She continued to have reactions, until she heard fellow hikers warn of threats to alpha-gal. After cutting out meat, she had less reactions and asked her doctor in Carbondale for a test to confirm her suspicion.
She wasn't diagnosed until 2025 — seven years after she suspected she was bitten by the culprit lone star tick. Hall said receiving her diagnosis gave her the comfort that there was a medical explanation for the many years of ongoing symptoms she’d been experiencing.
“It was less of a ‘Now I know what to do’ moment and more of a ‘this explains what has been happening’ moment,” she said.
Crystal Peairs, who splits her time living between St. Louis and Carbondale at her home near the Shawnee National Forest, ran into a similar problem. Years ago, Peairs, a chiropractor, had researched alpha-gal and told her doctor that she believed that is what was causing her symptoms. Shortly after eating beef, her body would swell. The next day, she’d experience a painful coughing fit after drinking her morning coffee.
“I would cough until I started to wheeze,” she said. “And then I would wheeze until I was gasping for air. And it would take me about an hour to recover from it. I was not okay. I was exhausted. I didn't understand what was going on.”
She raised the possibility of alpha-gal syndrome with her doctor.
“He was like, ‘You don’t have alpha-gal,’” she recalled. “And I said, ‘No, I think I have alpha-gal. Here’s why.’ And he goes, ‘I’ve never seen alpha-gal. You don’t have it.”
Smith, the UofI professor, said it remains underrecognized among many medical professionals in Illinois. In a recent survey by Smith, only 25% of medical professionals had heard of the condition, and just 12% knew there was a test available to diagnose it.
Crystal was formally diagnosed in 2023, through an immunoglobulin-E-antibodies blood test. The IGE blood test is the only manner in which alpha-gal is diagnosed.
Peairs and her wife, April, bought their southern Illinois home here during the pandemic, when they were seeing fewer clients at the family chiropractic clinic they run together in St. Louis. They’ve always loved the outdoors, and spend their weekends in the woods camping and hiking, though they’ve now had to take extra precautions because of alpha-gal syndrome.
Her wife, April, a social worker, received her alpha-gal syndrome diagnosis last year, after she began experiencing similar symptoms to Crystal’s.
“I was in St. Louis, and there's this really great calzone place, and I ordered a calzone that was basically, like, a cubano, so it had pork, it had ham, it had three types of cheese. It was basically an alpha-gal bomb,” she said.
“It was delicious, and I ate half of it, and then I proceeded to have what I thought was a panic attack. Like, my hands were shaking, I was sweating. It was bizarre. I have a history of panic attacks, but I hadn’t had one in years, and I thought I was having a panic attack, because it felt very, very similar.”
Dr. Jason Knuffman, an allergist and immunologist with Quincy Medical Group in Downers Grove, said alpha-gal syndrome is one of the newest food allergies on the scene, first recognized only 15 years ago. It’s taking the medical community by surprise, he said. Knuffman says he sees patients with the condition from Iowa, Missouri and Illinois.
“I’m definitely talking about it several times a day,” he said. “I think this is truly a condition where patients can educate their doctors.”
Navigating alpha-gal ‘a loss’ for some
Patients are often relieved to receive an accurate diagnosis, Knuffman said, though there’s not much he can do for them, beyond advising them to alter their diets. That can be a hard reality for some.
"That's what nobody tells you about it," Hall said. "It will change the way you eat, unless you eat like a rabbit anyway."
Although there is no cure for alpha-gal, many people have cited lessened symptoms with Soliman Auricular Allergy Treatment or SAAT, a form of acupuncture where a small needle is placed in the ear for three weeks. Crystal underwent SAAT, and said she has seen improvements in her symptoms, including that she can once again consume dairy.
“It’s really nice to be able to eat a cheese pizza again,” she said.
In a 2021 study published by the National Institute of Health, 96% of 137 patients were in remission after receiving SAAT, though the treatment doesn’t work for everybody.
Dining out can especially be a concern, though eateries are catching on — maybe quicker than doctors. A late May post in the popular Facebook group Southern Illinois Eats asked for restaurants that could accommodate people with the allergy. More than 150 comments followed. Numerous restaurant owners chimed in about alpha-gal-friendly meals they offered, as well about their conscientious cooking methods to prevent cross contamination with red meat. Several said they were increasingly hearing such requests. Friends tagged one another.
The University of Illinois study reported 10 southern Illinois counties with particularly high clusters of lone star ticks: Union, Johnson, Hardin, Jackson, Williamson, Saline, Franklin, Hamilton, Jefferson and Perry. But anyone can get the condition, even if they don’t live in a wooded area, Smith said. The active season for tick diseases is also expanding.
Southern Illinois University Zoology Professor Agustin Jiménez said lone star ticks are a growing problem in the area. In 2020, he advised a master’s student on a tick survey of 11 southern Illinois counties for her thesis project.
Through her research, the student, Victoria Phillips, found the lone star tick to be the most abundant, consisting of 80% of the ticks she collected. Further, she found the Shawnee National Forest to be a perfect habitat for lone star ticks as they require predators such as racoons or skunks to complete their life cycle. As well, the large number of hikers and campers create a perfect feeding ground for ticks, she found.
The length of time that people are at risk of tick-born illnesses is also expanding.
“People think spring, summer, fall — they don't think winter,” said Smith, the UofI researcher. “And we definitely know that people are getting tick-borne disease in the winter in Illinois. That's a climate change thing.”
It’s not just food that can set off a reaction.
Many prescription and over-the-counter drugs contain gelatin, a mammal-derived ingredient that can trigger reactions in some people. And Crystal and April Peairs discovered an allergic reaction to — of all things — toilet paper, some of which contains gelatin derived from mammals. They now buy speciality toilet paper made from bamboo.
“If you have a product that may contain trace amounts of mammal, there's enough of the population that could die from that, that they should be able to see that on a label, but you can't.
You have to go down rabbit holes and Facebook posts of people reacting, going, ‘I didn't know that’ and we learned a lot,” April said.
Two-thirds of respondents afflicted with alpha-gal reported anxiety or depressive disorders in a 2025 University of Missouri survey. Nearly half said the condition affected daily life, and 63% reported avoiding restaurants or social events because of concerns about food contamination.
"Everything we do surrounds food. People — they care about you, they want to cook for you," Crystal said. "But I really think it's more like a depression, like a loss. What you love to eat, you can't eat anymore. The restaurants that you go to, the people that you would see and visit — that for me is gone.”
Staff Reporter Kristin Borchers can be reached at kborchers@dailyegyptian.com. Staff photographer Riley Sembler can be reached at @riley_sembler@dailyegyptian.com.
Capitol News Illinois is a nonprofit, nonpartisan news service that distributes state government coverage to hundreds of news outlets statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation.
This article first appeared on Capitol News Illinois and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.
