A tick bite while on a family coastal holiday has left Glynis Kelly with the potentially deadly condition Alpha-gal syndrome. Photo: Supplied.
Farmborough Heights woman Glynis Kelly has a chilling holiday tale that should send a clear warning to others as summer approaches.
On an annual family getaway to South Durras near Batemans Bay in 2022, a paralysis tick bit her on the earlobe, leaving her with a relatively new and potentially deadly allergic condition known as Alpha-gal syndrome (AGS), which has impacted on just about every aspect of her life.
Tick saliva contains alpha galactose, a sugar molecule that is found in all mammals except humans and some primates.
When the saliva enters the human bloodstream, it is recognised as alien and triggers the immune system to fight it off.
People who develop AGS find that after a tick bite, any food they consume derived from mammals, including red meat, dairy foods and gelatine products, can trigger an immune response.
AGS was identified in 2007, but it’s estimated to affect 118 people in every 100,000 Australians.
Glynis’ allergic reactions range from mild to severe and number more than 20 each year.
Symptoms include a hive-like rash, diarrhoea, brain fog, breathlessness and on one occasion her lips began swelling, forcing her to now carry an Epipen.
The condition was initially named Mammalian Meat Allergy (MMA) but researchers soon learned it was not confined to red meat reactions and it’s not always triggered through food products.
For Glynis, it’s been a try-and-see experience and her list of triggers is now long.
Dairy products such as milk, cheese, butter and gelatin are obvious no-nos, but she has also reacted to soap, perfume and cosmetics that contain the trigger molecule.
“Even wine and champagne can trigger a reaction because a minute amount of the milk protein, casein, is often added as a fining agent,” Glynis said.
“Not even medications or vitamins are safe because they can contain mammalian byproducts particularly in their coating.”
What worries Glynis is the lack of awareness about AGS among the medical profession, yet AGS cases arising from hard-bodied tick bites have been reported on every continent except Antarctica, according to a 2022 US study.
Low levels of awareness can also lead to misdiagnosis, of similar but different syndromes such as irritable bowel syndrome.
“Thankfully, I was aware of AGS before my bite thanks to a friend in Sydney who was diagnosed with the disorder and his symptoms were similar to mine,” said Glynis.
“I insisted on a referral for an AGS test before any other test and it returned a positive result.
“The only clinician I spoke to who knew about AGS was my dietician.”
Glynis was referred to Professor Sheryl van Nunen, an eminent immunologist and clinical professor at Sydney University Faculty of Medicine and Health.
“Prof van Nunen is also the scientist who is known worldwide for establishing the link between tick bites and AGS, so it was such a relief to know I was in the best hands,” said Glynis.
“The professor’s clear message to anybody removing a tick is to freeze not squeeze and there are products for that,” she said.
Three years on, Glynis, a retired aged care administration officer, said AGS could be an antisocial and frustrating disorder.
“I have what is called a chef’s card which I hand over to cafes and restaurants listing my trigger foods,” she said.
“On a recent Blue Mountains trip, four out of five cafes turned me away because they weren’t prepared to take the risk, which is understandable,” she said.
“Shopping was a pain because I’d spend hours reading labels but it’s a lot easier now that I have the Spoonful app.
“It allows you to punch in your allergy then scan products with your phone and the app does the rest.”
As for the future, Glynis knows of people who have recovered after a few years without further tick bites and she is hoping one day to be one of them.
“My levels of reaction are reducing but my sensitivity is getting worse,” she said.
“At this point though I’m more concerned about tick awareness and bite prevention, particularly when their population is expected to explode after all the rain along the east coast.”
