One Friday night in the summer of 2018, Jaclynn Scott fried bacon for her family.
She had no idea how her life was about to change.
On Sunday, “I looked like I had been in a massive fight. I was almost anaphylactic. My brother rushed me to the urgent care, ”Scott said.
This mother of three was diagnosed with alpha-gal syndrome (AGS), which is an allergic reaction to mammal meat triggered by a tick bite. Data collected from 2010-2018 indicates Missouri is among the top five states with the highest number of cases. Local doctors say their patient load is definitely increasing.
Dr. Erich Mertensmeyer with Mercy used to count his alpha-gal patients.
“I stopped keeping track when I reached 200,” he said.
This allergy can be fatal, but it can also be mild. It can get worse over time. Some people may have chronic diarrhea for a year and then one day go into anaphylactic shock. Others go straight into anaphylaxis. Many people don’t develop the allergy for weeks after the tick bite, making it very hard for a patient to realize what is going on.
AGS was undiagnosed for decades because it does not follow a traditional food allergy path.
For those who suffer from it, it is often life-changing.
“The aftermath of diagnosis has been a horror show,” Scott said.
What is alpha-gal syndrome?
Alpha-gal is a carbohydrate found in mammals, except for humans and the great apes.
It is also present in tick saliva.
Evidence suggests when a certain tick bites a human, some of those bitten will develop an allergy to alpha-gal, which makes them allergic to mammal meat because it contains the same carbohydrate.
The Lone Star tick is associated with AGS, but so is the blacklegged tick (or deer tick), said Dr. Tina Merritt, who owns the Allergy & Asthma Clinic of NWA in Bentonville, Arkansas. She is an expert on the topic and has the syndrome herself. She trained with the man responsible for discovering AGS.
This allergy has been identified around the world so other ticks cause it, too, she said.
The reactions are not equal across the board.
Some people get stomach cramps, diarrhea, vomiting. Others have hives. Some go into anaphylaxis. Some react every time they eat meat. Others don’t. Some people are also allergic to dairy.
And some people, like Scott, are so allergic that even fumes from meat cooking trigger reactions.
More:How a search for a lost sister and a DNA test led two Ozarks women to siblings they didn’t know they had
How is AGS different from other food allergies?
Alpha-gal syndrome differs from most food allergies in two significant ways. First, in many food allergies the body reacts to proteins in food, while AGS is a reaction to a sugar molecule, said Mertensmeyer.
The other significant difference is the allergic reaction is not immediate, like it is with peanuts or shellfish, and usually occurs hours later, said Dr. Bill Mick, allergist at CoxHealth.
“It is a very odd allergy and that is one of the reasons it took so long to discover it,” Micka said.
Both physicians say they have had patients come in with chronic gastrointestinal problems or chronic hives.
“I had one patient who had swelling of her lips for a decade,” said Dr. Mertensmeyer.
In the medical field, this is a relatively new diagnosis and many people, sometimes every primary care physicians, aren’t aware of it and don’t know to test for it.
How was alpha-gal syndrome discovered?
It started in 2001 when Cetuximab, a monoclonal antibody drug to treat cancer, was causing anaphylaxis in a small number of patients.
At that time, Dr. Merritt was training with the man credited with this discovery: Dr. Thomas Platts-Mills, professor of medicine and microbiology and head of the division of allergy and clinical immunology at University of Virginia (UVA).
ImClone, a biopharmaceutical company, and an oncologist at UVA asked Dr. Platts-Mills to develop a test to see why some patients had anaphylaxis on the first infusion of the drug.
They found four samples were positive for IgE to Cetuximab, the allergy antibody.
Dr. Merritt then moved to Bentonville. In 2005, a patient died in Bentonville on the first infusion of Cetuximab. She called Dr. Platts-Mills and told him.
“I asked Dr. Platts-Mills to develop a test, ”she said.
The researchers realized Cetuximab had alpha-gal carbohydrate attached to the monoclonal antibody. The cancer drug was grown in an animal cell line which added the carbohydrate.
“Dr. Platts-Mills figured out the reactions were mostly in the mid-South and figured out they matched the distribution of the Lone Star tick, ”Merritt said.
According to an article from UVA, Dr. Platts-Mills also later developed AGS and used his own blood to further his experiments.
Dr. Merritt is co-owner of the patent for the alpha-gal test. A lab in Lee’s Summit, Missouri, is the nation’s leading provider of the test, she said.
How AGS is affecting patients in the Springfield area
Looking back, Scott believes she’s had alpha-gal syndrome for some time because she kept developing rashes, had a swollen belly and other skin sensitivities.
Doctors originally suspected she had rheumatoid arthritis. She said sometimes health care professionals would look at her “like I am crazy.”
Scott doesn’t remember being bitten by a tick but went deer hunting the winter before and thinks that is where the bite occurred.
Scott has a very severe case because her allergy is triggered by fumes – she doesn’t even have to eat the meat. In fact, she never ate the bacon that caused her first urgent care visit. There have been many more visits since then.
Scott can’t eat out. She had to quit her job in a printing company because animal byproducts can be used in ink and she became allergic. She struggles in a grocery store because of the amount of meat products. She reacts to a variety of products from lotion to medicine.
“Learning what beef and pork is used in will blow your mind,” Scott said.
She spends most of her time indoors.
Susan Ellwood, 74, has a less severe case.
Ellwood came down with AGS in June 2021.
“I ate steak two times in a row. The first week, I got a few welts. The second week, I swelled up l like a toad, ”Ellwood said.
Ellwood lives in Springfield but has property on Table Rock Lake, which is where she got three tick bites last year.
Her reaction to the steak occurred six to eight weeks after the bites. That is a common timeline, according to doctors, but some people may not react for longer.
Dawn Williams, 50, of Nixa, quickly recognized that she had AGS.
“I requested the test because I know two people with alpha-gal. I got bit by a tick 10 days before I ate a hamburger and I got really sick two nights in a row. I had horrible stomach cramps, diarrhea, nausea, ”she said.
Williams suspects she’d had alpha-gal for years. She never liked eating red meat because it made her feel like “I had a rock in my stomach.”
Williams cannot consume dairy products and has even reacted to hair dye that wasn’t vegan.
Some people will even react to pets, horses or leather, said Dr. Merritt.
Williams no longer eats out, which has been a big adjustment.
“I miss my social life. You don’t realize how much everything revolves around food: restaurants, holidays. It affects so many aspects of your life. It’s exhausting, ”Williams said.
Is alpha-gal syndrome genetic?
About a month after Williams was diagnosed, her daughter Sierra Shields, who lives in St. Louis, got into a bed of about 30 ticks.
Shields became ill, went to urgent care and was diagnosed with alpha-gal.
Shields, 24, has a severe case and reacts to fumes, her mom said.
Then Williams’ mother, who lives in Sparta, developed AGS.
Three different cities. Three different family members. All of them have AGS.
Is it genetic?
All three allergists interviewed by the News-Leader said they have some patients that have other family members with AGS, but there isn’t enough research to make any conclusions.
“No one has done the research to know (if AGS is genetic), but allergies are genetic. If a child has a parent who is an allergy sufferer, that child has a 30 percent chance of having allergies, but if the child has two parents who are allergy sufferers, it’s a 90 percent chance, ”Mertensmeyer said.
How common is alpha-gal syndrome?
Currently, AGS is not being tracked on the state or national level, so there are no hard numbers.
Dr. Merritt has more than 1,000 alpha-gal patients but sees patients remotely, so those are not all located in Arkansas. She has many Missouri patients.
“There is no good study, but I’ve read that, depending on the region, one to three percent of the population have alpha-gal. Mercy covers 1.5 million people. That’s a lot of people, “Mertensmeyer said.
Information provided to the CDC by Viracor-IBT Laboratories in Lee’s Summit reported 34,256 positive cases between 2010-2018. Those latest figures are four years old.
Among the other physicians in their practice, Dr. Micka said they see several hundred patients. He has several every week.
“It is the most common adult-onset food allergy I see,” said Dr. Mick. “Alpha-gal is more common in southwest Missouri than it is the other parts of the country, so people who live here are at higher risk.”
States with the highest positive tests for alpha-gal syndrome (not in order):
Source: Viracor-IBT Laboratories in Lee’s Summit to CDC. Data is from 2010-2018
Symptoms of alpha-gal syndrome
(Thirty-seven percent of AGS patients reported 15 or more reactions prior to being diagnosed, according to a presentation by Dr. Tina Merritt based on data collected from a survey with 2,122 AGS patients.)
• Hives or itchy rash
• Severe stomach pain
• Nausea or vomiting
• Cough, shortness of breath or difficulty breathing
• Drop in blood pressure
• Swelling of the lips, throat, tongue or eyelids
• Dizziness or faintness
• Heartburn or indigestion
Source: Centers for Disease Control
What is mammal meat?
• Rabbit and more
Alpha-gal also can be present in:
• Milk and dairy products
• Some medications and capsules
• Some vaccines (the CDC has a list on its website)
• Magnesium stearate
• Bovine extract
Source: Centers for Disease Control
Alpha-gal Information is a website created for people with AGS by others who have the syndrome:
Tick-Borne Conditions United:
Centers for Disease Control:
Alpha-Gal Allergy Awareness at Home contains tips for living with AGS: