DULUTH, Minn. — It was last June, and Suzanne Keithley-Myers was driving back to her family's Duluth Township home after mushroom hunting in the Aurora area. As she drove, she spotted a few ticks on her body, and she reacted as any Northlander would.
"Driving home, pulling ticks off, chucking them out the window," said Keithley-Myers, 40, earlier this month in the woodsy home she shares with her husband, Billy, their three school-age children and their two dogs.
The "bull's-eye" rashes that appeared a couple of days later surprised her, she said. A registered nurse in oncology with Essentia Health in Duluth, she knew such rashes can be an indicator for Lyme disease, which is caused by a tick bite. But it didn't make sense. A tick was supposed to be feeding for more than 24 hours before it could cause Lyme disease, Keithley-Myers thought. She knew the ticks she'd chucked out the window couldn't have been with her for more than a few hours.
Nonetheless, Keithley-Myers was given doxycycline, an antibiotic used to treat Lyme disease.
That was followed by abdominal pain, a change in antibiotics, a trip to the emergency room and hives.
Then a dawning realization: The symptoms were occurring after Keithley-Myers ate meat. But not all kinds of meat; chicken didn't cause a problem.
"So I Googled 'meat allergy' and this allergy popped up," she said. "It's almost always associated with a tick bite."
The allergy is called alpha-gal, and Keithley-Myers wasn't alone among Northland residents in developing it.
Her allergist, Dr. Alaaddin Kandeel of Essentia Health, has seen at least 20 cases in the past three or four years, he said.
The allergy first appeared domestically in the Southeastern U.S. Novelist John Grisham, who lives in Virginia, is among those who have been diagnosed with it, according to the Allergic Living website.
"Something called lone star tick," Kandeel said.
The tick, which has a whitish spot on its upper side, is a southern critter with a normal range extending no farther than the southern tier counties of Iowa, said David Neitzel, the Minnesota Department of Health's go-to epidemiologist for all things insect-related.
But "we're starting to see some in Minnesota," Neitzel said. "I've worked on tick-borne disease since '85, and I can't even imagine how many (ticks) I've seen. But there have been only a few dozen records of the lone star tick in this state."
Outside of the southern part of the state, he has seen only a couple of scattered reports, Neitzel said.
Other species of tick, particularly the blacklegged tick (formerly known as the deer tick) and the American dog tick (aka wood tick) are more common in Minnesota. Could one of them produce the alpha-gal allergy?
"That's still an open research question," Neitzel said.
'Covered with hives'
Keithley-Myers didn't get a close look at the ticks she found on that drive home from Aurora, she said.
Heather Fealy did, although at the time she didn't know what it meant.
It was late April last year when the Orr woman found a tick on her rib cage.
"I didn't think anything of it," said Fealy, 44. "Pulled it off, and I noticed it had like a white spot on its back. Well, it was the regular size of a wood tick, so I thought it was some kind of mark or defect."
Fealy didn't experience a rash or negative reaction. But a couple of months later and about three hours after eating sloppy joes, she had hives on her arms. She took Benadryl; it didn't help. A doctor prescribed prednisone, and the condition worsened still more.
"That following morning, I was covered with hives," she recalled. "Even the bottoms of my feet. It was pretty intense."
Her lips, ears and tongue were swelling, she said. Her throat started to close up. Her mother took her to the emergency room in Cook, where she was given a shot and referred to an allergist in Duluth.
Although food causes the allergic reaction, it's the tick bite that transmits the allergy, Kandeel said. An unusual feature of the allergy is that it's the carbohydrates in the meats, not the proteins, that triggers it, he said. Another unusual feature is that it typically takes a number of hours before the reaction occurs.
"The patient eats the food, dinner, let's say at 7 or 8 o'clock," Kandeel said. "They go to bed fine. They wake up around midnight or 2 o'clock in the morning with symptoms, either a rash or difficulty swallowing, difficulty breathing."
Stomach pain, diarrhea and vomiting also are "not uncommon" reactions, he said.
Some patients also react to milk products, Kandeel said, although he added that that's not common.
Keithley-Myers initially had to give up dairy, she said, but has been able to add it back. Fealy said she has learned to stick to ice cream with more natural ingredients.
She's thankful, Fealy said, for a relatively rapid diagnosis.
"It was very traumatic, and I was very fortunate to find out what it was because people go for months," she said.
'I think you have it'
Such was the case for Diane Van Eeckhout. The 40-year-old Nisswa, Minn., woman traces her allergy to a tick bite in October 2015, but she didn't have a positive test for alpha-gal until January — and even then has had a hard time convincing doctors to believe the test, she said.
Van Eeckhout lives with her husband, Greg, and 17-month-old daughter Rachel on a little lake in Nisswa, which is north of Brainerd. It's a beautiful spot, she said. It's also replete with ticks. Recently she was taking clothes off the line, she said, and looked down and saw five ticks on her pant leg.
After the initial tick bite — there were three subsequent exposures — Van Eeckhout noticed she was often feeling ill. She attributed that to being in her third trimester, but the symptoms got worse, with severe stomach aches and joint pain — after Rachel was born.
When Rachel was 4 months old, Greg was diagnosed with lymphoma. A doctor in Brainerd attributed her continuing symptoms to depression. She also was diagnosed with fibromyalgia, and then with irritable bowel syndrome. A doctor recommended a gluten-free diet. Another told her to go low-carb. On doctors' orders, she was taking 15 different pills.
She kept feeling sicker.
She now knows that each of the pills contained gelatin, which contains a mammal product. On her low-carb diet, she was eating vegetables, meat and cheese.
She developed a rash. She noticed she was getting sick anywhere from two to eight hours after she ate, although not every time she ate.
She might still be at a loss, Van Eeckhout said, had Greg not heard a Minnesota Public Radio story about alpha-gal in January that featured Keithley-Myers.
"He texted me from work and he said, 'I think you have it,' " Van Eeckhout related. "I said, 'Oh my gosh, that makes perfect sense.' But no doctor would listen to me."
She's proud of advocating for herself, Van Eeckhout said.
"The doctor who decided it was fibromyalgia and all these things, he fired me," she said, with a chuckle. "He told me to go fight with someone else."
She convinced a physician assistant to run a blood test, and it came out positive. But an allergist in Brainerd didn't believe the test results, she said. She went to the Mayo Clinic — which ran the test — and an allergy specialist there also was skeptical. He ran a new blood test, and then another. It came out positive both times.
But Van Eeckhout has turned to an online community for most of her information about her allergy.
"These people are the only and the best information you can trust," she said. "Doctors don't know anything about it. My pharmacist doesn't know anything about it. The Mayo Clinic doesn't know anything about it."
Drawing mostly from information online, Van Eeckhout eliminated mammal meat and dairy products from her diet. After a skin biopsy revealed she was allergic to all of her medicines, she dropped them.
"After I changed my diet completely and got off the medicine, the rash went away," she said.
It's a healthier diet, she acknowledged, although not her choice. She misses ice cream cones and burgers on the grills. Turkey hot dogs are "really kind of gross."
"You really get sick of poultry, I can say that," Van Eeckhout said. "It was never my biggest thing."
The available information on alpha-gal at this time suggests that it can diminish or disappear over time, but that doesn't happen in all cases, Kandeel said.
Keithley-Myers, who said she has been able to "relax my vigilance," hopes when she's next tested in July it will show she's less allergic or not allergic at all.
In the meantime, her diet and her family's diet at home remain mammal-free. She can't cook hamburger and not be affected by the residue, she said.
"When we go out, we have permission to order what we want," Billy Myers added, as both laughed.
Check for ticks
Kandeel said he's aware there's some skepticism in the medical community about alpha-gal, but in the absence of any other plausible explanation he's sticking with his diagnosis.
"I do believe this is an entity that's real," he said. "I have over 20 patients that have the symptoms and problems that have resolved once they have avoided those foods. And this not only coupled by symptom improvement but evidenced also by positive blood tests."
We're in the height of tick season, Neitzel said. Although ticks show up as soon as snow melts, the highest risk in Minnesota is from mid-may through mid-July.
All three of the women interviewed for this story say they've increased their defenses against ticks. Keithley-Myers uses more insect repellant, tucks her pants into her boots and thoroughly checks for ticks as soon as she comes inside, she said. Van Eeckhout wears rubber boots in the garden and sprays them with a pesticide. She has limited the areas indoors where the pets are allowed.
She recalled a father, a forester in Cass Lake, Minn., doing "a little jingle and a dance" every night about how everyone needs to check for wood ticks.
"As a kid, we always thought it was funny, but the reality is we really need to check for ticks every single day," Van Eeckhout said.
"It's not a joke here anymore."