Alpha-Gal spreading
It’s difficult to believe those tiny Lone Star ticks we’ve regularly picked off ourselves after spending time in the grass and weeds can be as dangerous in their own way as a poisonous snake. And only the foolish won’t take that to heart.
Readers may recall several weeks back I told of the serious human lifelong misery caused by a tick bite that, among other diseases like Lyme and Rocky Mountain Spotted Fever, is known by its scientific name as Alpha-Gal Syndrome, (AGS). Despite its name, the syndrome afflicts as many or more men than women.
The illness has become increasingly known and widespread, including by many physicians who had been previously unaware of this often undiagnosed allergy that can wreak havoc through fever, chills, a red rash, dizziness, bloating, neck stiffness, gastrointestinal distress, drops in blood pressure, anaphylaxis and more.
But that’s been rapidly changing in Arkansas. Jennifer Burton tells me the state’s Department of Health has been quietly working hard to become the nation’s first state to make Alpha-Gal a mandatory reportable condition for physicians as of Sept. 11, 2023. Presently, the Centers for Disease Control and Prevention only requires voluntary reporting. “This is a huge step forward in tracking the actual number of those afflicted with AGS in Arkansas and hopefully help everyone understand it’s caused by a tick bite,” Jennifer said.
Things aren’t like they used to be, she told me. “No more, ‘oh it’s just another tick.’ These ticks carry a number of diseases. Prevention is the key.”
She should know. A survivor of Alpha-Gal herself, Jennifer and her husband Eric are founders of the Facebook group known as Alpha-Gal Encouragers Inc., based in northwest Arkansas where she is the nonprofit’s outreach coordinator.
“Research shows 76 percent of ticks tested are infected with at least one disease-causing organism,” Jennifer continued. “Forty-nine percent are co-infected with two or more, 20 percent carry three or more, and 9 percent of the ticks tested carry four or more, which can be passed on through their bite.” Once bitten, the odds of contracting an ailment also are much higher than I suspected.
All tick-borne diseases can cause symptoms that usually develop within a few days to a few weeks after the bite. Possible symptoms may include a swollen red spot or rash near the bite or a “bull’s-eye” rash, headaches, fever, chills, nausea, weakness or dizziness, neck stiffness, muscle and/or joint pain or soreness, sudden drop in blood pressure, dizziness, blurred vision, confusion, rashes, hives, swollen lymph nodes and chronic fatigue.
“After the two CDC reports on July 28, 2023, regarding the estimated number of [U.S.] AGS patients (close to 500,000) and only [approximately] 42 percent of doctors even knew what AGS is, the Alpha-Gal Encouragers have been mounting an awareness campaign,” Jennifer said. “The state of Arkansas is mentioned often in those and follow-up reports as being one of the top six states known for the Lone Star tick and the high number of AGS cases.”
Jennifer told me her Facebook support group has over 2,250 members and continues to grow rapidly; the majority of the members are in northwest Arkansas, with the highest concentration from Bella Vista to Fayetteville. “With Arkansas being ranked sixth in the nation for the Lone Star tick, the CDC’s reports are alarming to say the least.”
Once bitten, a person’s immune system reacts to galactose-alpha-1,3-galactose (therein the name Alpha-gal), a protein-linked saccharide (carbohydrate/sugar) found in mammals other than humans, triggering an increase in alpha-gal antibodies. This results in the release of histamines after the person eats mammal meat such as beef or pork. Allergic reactions are typically delayed for three to over eight hours, which often can result in misdiagnosis or a lack of diagnosis.
“Those who suffer with Alpha-gal Syndrome must be constantly vigilant to avoid mammalian foods, by-products and ingredients they consume and use. The allergic reactions, though they vary greatly in individuals, can be severe, life threatening and/or fatal,” Jennifer continued. Even worse, this is a lifetime ailment.
“I’m an Alpha-gal and believe me, you don’t want to be. I was finally properly diagnosed in April 2017 after suffering for six-plus months with continuous, increasingly worse anaphylactic reactions, not knowing what the cause was. I barely survived the fourth anaphylaxis attack on Feb. 27, 2017, which finally resulted in my being properly diagnosed. I’d been having various unknown-cause allergic reactions since summer of 2011.”
Hard to believe a single tick bite can forever put an end to many of the foods we’ve long enjoyed.
“Food is the primary way we, as a society, socialize, whether it’s a holiday celebration, business luncheon or a casual lunch or dinner with friends. Most social events revolve around food,” Jennifer said. “When the majority of us can’t eat at most restaurants due to the possibility of cross-contamination with mammal meats and/or dairy, we become depressed and secluded.
“The Encouragers provide answers and suggestions to help AGS patients cope with those changes. Not just in diet, but other products as well. We meet every other month in person to offer an opportunity for those who have been diagnosed to find answers many doctors don’t have. Many doctors think it’s a ‘simple’ matter of not eating beef or pork, but for most it usually goes much further than that. That’s where we come in with education and encouragement to empower each other with the knowledge we need to live a somewhat normal life again.”
I’d encourage anyone who suspects they are suffering from the syndrome to be tested and, if diagnosed, to contact the group for support at alphagalencouragers@gmail.com, or at facebook.com/groups/AlphaGalEncouragersNWA.
Now go out into the world and treat everyone you meet exactly like you want them to treat you.