The rising number of Americans are claiming to suffer from an immune syndrome disorder and meat allergy caused by a sugar found in tick bites.
The disorder is known as Alpha-gal Syndrome, named after a carbohydrate found in most mammals except humans and apes — and the saliva of some ticks, according to the Springfield News-Leader.
Tick bites can lead to an allergy to Alpha-gal, meaning that eating meat that contains the carbohydrate can cause an allergic reaction.
Symptoms range from mild to potentially fatal. People have described everything from anaphylaxis to chronic diarrhea, vomiting, or breaking out in hives.
Some people are so allergic that even the fumes from meat cooking nearby can trigger reactions, says Dr. Tina Merritt, who trained with the doctor who discovered AGS, developed the test for the allergy and herself suffers from it.
The CDC says that AGS may be triggered by the bite of a lone star tick in the United States, but other kinds of ticks have not been ruled out. Other tick species have been connected with the development of AGS in other countries.
It doesn’t trigger immediate reactions like shellfish or peanuts – and can often go years, even decades without being diagnosed.
The allergy was discovered in 2001 when Dr. Thomas Platts-Mills, a medicine professor at the University of Virginia, was working on a monoclonal antibody drug to treat cancer when he noticed it causing anaphylaxis in a few patients.
Pictured is the Lone Star Tick, identified by the which spot on its back, which can trigger the condition. Its saliva carries the AGS molecule, also found in red meat. When it bites someone their immune system may attack this molecule, meaning it will also target the same molecule from red meat — triggering an allergic reaction
This map shows the range of the Lone Star Tick (yellow area). It is present across the eastern and southern United States
Symptoms range from mild to potentially fatal. People have described everything from anaphylaxis to chronic diarrhea, vomiting, or breaking out in hives
After a person treated with the drug, called Cetuximab, they realized that it had alpha-gal carbohydrate attached to the monoclonal antibody because it was grown using animal cells.
Platts-Mills, somewhat ironically, also contracted AGS and used his own blood to experiment.
Perhaps the most famous person to publicly acknowledge suffering from AGS is mystery writer John Grisham, who himself caught it after a tick bite and no longer eats meat.
He told Allergic Living his last outbreak came after eating rabbit meat in Paris in 2012 ‘It was pretty ugly.’
Jaclyn Scott, a woman who came forward as having the syndrome, said she believes it’s been with her since 2017. She has referred to it as ‘a horror show.’
Two days after frying bacon for her family, she said ‘I looked like I had been in a massive fight. I was almost anaphylactic. My brother hit me to the urgent care.’
Scott says her symptoms include developing rashes, had a swollen belly and other skin sensitivities.
Doctors originally thought she had rheumatoid arthritis and thought doctors looked at her ‘like I am crazy.’
She is one of the people triggered by fumes of meat, which means she can’t go out to eat and had to even quit her job in a printing company because animal byproducts are used in the ink.
Scott says she can’t go to grocery stores without difficulty and has reactions to various lotions and medicines.
There are no official national or state-by-state case counts for AGS, but Merritt claims to have over 1,000 patients, many she sees remotely.
Information given to the CDC reported 34,256 positive cases between 2010-2018, but those are the most recent figures available, with states in the Midwest and south showing the most cases.
Dr. Erich Mertensmeyer, who has treated hundreds of patients, says that in some regions, anywhere from one to three percent of the population could have it.
The CDC recommends contacting an allergist if you show symptoms and checking clothes and other items for ticks, especially when going outdoors.
Perhaps the most famous person to publicly acknowledge suffering from AGS is mystery writer John Grisham, who himself caught it after a tick bite and no longer eats meat
The allergy was discovered in 2001 when Dr. Thomas Platts-Mills (pictured left), the medicine professor at the University of Virginia. Jaclyn Scott, (pictured right), who came forward as having the syndrome, said she believes it’s been with her dela since 2017 and has been ‘a horror show’ for her
What is Alpha-gal Syndrome? How is it triggered? What are the symptoms?
Alpa-gal Syndrome (AGS) is an allergy to a sugar molecule found in red meats including beef, pork and venison.
Up to three per cent of Americans have the condition, or 9.8million people, estimates suggest.
What triggers AGS?
The allergy has been linked to bites from the Lone Star Tick, identified by a white spot on its back, which lives along the East Coast.
Its saliva can contain AGS, the same molecule as in red meats.
When the immune system attacks this molecule after a bite, it will then also attack AGS from red meat — sparking an allergic reaction.
Scientists are investigating whether other tick species can trigger the condition.
What are the symptoms?
Sufferers experience the following about two to six hours after eating red meat, or in some cases being exposed to its fumes:
- Hives or itchy rash;
- Nausea or vomiting;
- Heartburn or indigestion;
- Cough, shortness of breath, or difficulty breathing;
- Drop in blood pressure;
- Swelling of the lips, throat, tongue or eyelids;
- Dizzyness or faintness;
- Severe stomach pain;
Is the condition fatal?
The CDC says reactions differ from person to person.
But in some cases it can trigger anaphylaxis — a severe allergic reaction which can be fatal if not treated quickly.
How is AGS diagnosed?
Doctors carry out blood tests to check for specific antibodies that attack the molecule from red meat.
How is AGS treated?
Patients are advised to avoid any products that contain AGS.
This includes red meats, and other foodstuffs using animal products including cow’s milk and Haribo.
Can I prevent the condition?
Doctors say people should avoid grassy, bushy or wooded areas where ticks may be found.
After coming inside they also recommend showering and performing a thorough ‘tick check’ to ensure they have not been bitten.