Alpha-gal Sufferers Share Stories

Many Stone County residents who have been diagnosed with tick-borne diseases describe suffering from mild to severe discomfort, pain and other recurring symptoms for years before someone orders the proper testing to solve the puzzle.

Those with alpha-gal syndrome — which cause an allergic reaction to red meat and sometimes byproducts — seem particularly at risk for delayed or missed diagnosis because the symptoms occur 3-6 hours after ingesting the problematic food, and they mimic other medical conditions.

One resident who asked not to be identified by name said she was sick throughout her second pregnancy, suffering stomach pains, elevated heart rate, passing out, random rashes, severe fatigue and body aches. All her symptoms were characterized as being part of a “difficult pregnancy” for a 36-year-old.

If she had only remembered that one day she had been assailed by seed ticks at her mailbox, and been aware of what that could mean, she feels she could have saved herself and her family a lot of suffering and fear.

She carried her baby to full term but the symptoms persisted. She visited the emergency room two weeks after giving birth with severe stomach pain, difficulty breathing and rigors. She was told she was either having a severe panic attack, or perhaps had a blood clot in her lungs. After blood work, urinalysis, and imaging of her chest, she was discharged with a diagnosis of constipation.

In hindsight, she thinks the Phenergan administered for nausea might have saved her life by stopping the anaphylaxis. She had eaten a hamburger for supper that night, 4-6 hours before the attack began.

Her random symptoms persisted and her primary care doctor could not find a cause for them. So over the next few years she saw a cardiologist, a rheumatologist (diagnosing with osteoarthritis and inflammation).

After more ER visits because of severe abdominal pain, she saw a gastroenterologist and was diagnosed with gallstones. Her gallbladder was removed but the pain did not go away. A colonoscopy and EGD [diagnostic endoscopic procedure] revealed nothing abnormal.

Finally, her physician ordered a “rainbow of tests” including tick-borne illness titers, and she was found to be positive for Rocky Mountain Spotted Fever (RMSF) and Babesia. She was treated with Doxycyline for RMSF and later Azithromycin and a parasitic liquid to get rid of Babesia. Most of her symptoms went away, but she continued having bouts of difficulty breathing, rashes, and severe abdominal pain. Because of that she was tested for alpha-gal syndrome and was positive.

This was a few years ago, and she said local doctors had just then started testing patients for the fairly unknown disease/allergy.

She changed her diet to include only chicken, turkey and seafood, and made sure all her medications and cosmetics were vegan. She did many hours of research on the condition, and sought help from online support groups. She tried acupuncture treatment twice with little success.

There is little to do except avoid anything mammalian.

“There are days cooking — or even eating — a piece of steak would not harm me,” she said. “But then there are days that just the fumes from cooking a steak threaten to close my throat.”

If she eats at a restaurant she can request that her chicken not come in contact with red meats, but the risk of cross-contamination is high no matter how careful the kitchen staff is. She has a prescription for steroids, topical Phenergan, and she carries an EpiPen for emergencies.

“I still battle with episodic rashes, joint pains/inflammation and upset stomach,” she said, “but being aware of my diagnosis and knowing ... how to treat reactions if they occur has been a huge help.”

She wants more people to be aware how much damage even a seed tick can do to a person.

“I suffered almost five years without diagnosis despite wonderful doctors doing their best to give me relief.”

Brad’s story

About two years ago, Brad Griffith of Fifty Six had a sudden onset of illness with fatigue, mind fog and middle-of-the-night breathing difficulties and feelings like he was having a heart attack. He would wake up and feel fine. He went to multiple doctors and specialists who “wanted to push medicines with equally bad effects,” he said. He was diagnosed with Lupus.

is condition deteriorated so that he wasn’t able to meet the obligations of his job in restaurant food supply or managing rental properties. There were days when he couldn’t get off the couch.

Brad changed doctors and described his symptoms to Dr. Charles Pearrow, who did blood work to confirm his suspected diagnosis of alpha-gal syndrome. He advised Brad to avoid anything derived from animals with four legs, including vitamins in gelatin coatings, and he warned, “Your next cheeseburger could kill you.”

Brad said he would get stomach cramps and hives from seemingly everything he ate, and he started avoiding all food because eating was the one thing he knew would trigger his reaction.

“I thought he was full of baloney,” Brad said of his new doc, “but then I ate a cheeseburger ...”

He was convinced to limit his meat intake to chicken, a staple from his childhood, and fish, which he had always detested but learned to tolerate. As a result, his health “totally turned around.”

After his gut stabilized, Brad was referred for acupuncture treatment with Dr. Jeff Holt, which enabled him to eat a fairly normal diet as long as he does not overindulge in red meats or byproducts. After about a year and a half, though, it is starting to wear off and he is considering repeating the treatment.

With a job selling food to restaurants, he needs to be able to walk into a kitchen where meat is being cooked without his skin starting to itch.

Brad recommends getting bloodwork done, especially men who tend to avoid preventive healthcare.

“You can get your life back.”

Brad does not remember having a tick bite that concerned him, and the same goes for Prissy Thomas, who joined the alpha-gal club earlier this year.

Prissy’s story

Having caught Covid-19 three times since 2020, she was told her symptoms of swelling stomach, fatigue, brain fog and gastrointestinal issues were related to Long Covid — a term used when Covid patients have varied symptoms that continue for weeks, months or years.

Prissy said she is allergic to a lot of things and other foods, so when she went to her doctor and complained specifically about her stomach swelling dramatically after meals, she was tested for alpha-gal and the diagnosis was confirmed. She was advised to avoid eating pork and beef and to see an allergy specialist.

She avoided the foods as directed, and obtained an acupuncture treatment, after which she started feeling better. However, another doctor figured out that a medicine she takes for her thyroid contains pork byproducts, so the doctor is still trying to find an acceptable drug.

“Talk about a big eye-opener, this has been,” Prissy said. “It will mess up your gut.”

She has changed her diet, but once ate green beans seasoned with bacon and got sick. She has also cut back on dairy products.

“It’s hard to do,” she said.

She has chosen to wait until autumn to repeat the acupuncture treatment, which she was told had been less effective because she did not know about her medicine containing pork. She also may see a gastroenterologist. She was told it could take two years to resolve her gut issues.

In the meantime, just knowing what the problem is has helped her manage it, and knowing her symptoms are not unique to her is comforting.

“I’m feeling better now, but I guess it’s just gonna take awhile.”

Prissy invites anyone who wants to talk about alpha-gal to visit her florist shop off Massey Avenue.

“Just comparing symptoms helped me more than anything.”

Katie’s story

Katie Rogers of Mountain View said she was diagnosed with alpha-gal this year but has had symptoms for many years, including moderate to severe gut pain, arthritis, fatigue and sometimes hives. It was so severe that she lost 50 pounds.

To help her avoid triggers, she uses two phone apps (Fig and Spoonful) to help identify ingredients in packaged foods that may cause problems. She has had some prescription medications changed, and now assures all toiletries, shampoos and lotions are vegan. She carries an EpiPen to deliver an epinephrine injection and has informed her neighbors so that in case of an emergency they know how to use the device and to call 911. She has also ordered a medical alert bracelet.

“It seemed hopeless at first but now I am eating better and, most importantly, feeling a lot better,” Katie said.

Ashley’s story

Ashley Sanders of Pleasant Grove was diagnosed with alpha-gal syndrome this year, but her family thinks she may have had it since she was about 8 years old. As a child she never had many health issues, but sometimes her cheeks would turn rosy red. At age 32, her cheeks never get red unless she is exposed to a trigger.

Gastrointestinal issues have been her main challenge, but she also describes breaking out in hives, swelling of her ear canal, anxiety, and having osteoarthritis in all her joints even though she is too young for that to be typical.

When she developed an intolerance to glutins, she was tested for celiac disease and also for alpha-gal, which was confirmed. Since then, she has managed fairly well through diet, but is undergoing further testing because her doctor suspects another allergy related condition.

Ashley is experimenting with foods and searching out recipes she can cook at home that she and her husband will enjoy. She has learned that meat from the ostrich and emu are acceptable, and it tastes similar to beef, she said.

Because she is “fume reactive” and cannot even be in the same room where meat is being cooked, she does not go to restaurants or even to her parents’ home if it is meal time. It precludes her from going to most family gatherings, but her husband still attends to take advantage of being able to eat foods he cannot enjoy at home. However, if he has been eating foods that are triggers for her allergy, she doesn’t dare even give him a kiss.

Ashley is in several online support groups and has been reading about acupuncture but is not convinced it is right for her.

She urges residents to apply tick crystals in their yards and to take other precautions against ticks.

Also, for those managing symptoms, look for certified vegan logos on foods and medicines to assure they are truly free of animal byproducts. An ingredient that is often overlooked, she said, is lanolin, which comes from wool.