Myfanwy Webb remembers her son Jeremy was “always getting ticks” because he spent a lot of time in the bush, camping and mountain bike riding, around the property where he grew up on the Central Coast of New South Wales.
When Jeremy began to get really bad reactions to eating meat, or even when the scent wafted through the house if she was cooking a pork roast, Webb remembered reading an article about an immunologist who identified the connection between tick bites and developing mammalian meat allergy.
But even though the family were aware of the allergy, Webb says: “I thought it was more like a food intolerance. I didn’t realise it could cause anaphylaxis.”
But that is the cause which NSW coroners this week attributed to Jeremy’s death at 16 in June 2022, despite the autopsy originally putting it down to asthma. The coroner found: “Without the anaphylaxis caused by the allergy Jeremy’s asthma would not have caused his death.”
The coronial inquest confirming the allergy as the cause of death only came about after Webb and her family advocated strongly for it, in order to improve public awareness about the issue.
As her son now makes headlines around the world as the first person known to have died of a meat allergy triggered by a tick bite, Webb takes strength in the fact her son, who always made a big impact on others during his life, continues to do so with a legacy warning others of this increasingly common “21st-century allergy”.
Otherwise, “no one would know about this fatal risk out there of the tick,” Webb says.
How worried should you be about ticks?
The doctor Webb read about, Prof Sheryl van Nunen, a clinical immunologist and allergist at the National Allergy Centre of Excellence, says after two or more tick bites, one in two people’s bodies will make the allergy antibody.
Therefore, preventing a tick bite from occurring is the most important strategy: “No tick bites, no problem,” Van Nunen says.
She recommends if someone is going to be spending time in an area where ticks are found, to follow advice from the Tick Induced Allergies Research and Awareness (Tiara) website including dressing for the occasion. The website advises people to prevent tick bites by using insect repellent and to wear long-sleeved shirts and long pants, tuck their pants into long socks and wear a wide-brimmed hat.
It also recommends wearing light-coloured clothing, which makes it easier to see ticks, and after being outdoors to remove clothing and place clothes in a hot dryer for 20 minutes to kill any ticks as well as checking for ticks on the body.
For people whose homes are in tick-prone areas, the website also offers management advice, such as installing fencing, which can prevent host animals dropping ticks as well as children from entering those areas.
What if you find a tick?
“You’re probably going to be able to negate the effect of the tick bite if you deal with the tick properly,” Van Nunen says.
“Pulling it out with your fingers, taking it out with tweezers, get ready to have mammalian meat allergy or tick anaphylaxis – that’d be the same as putting on a black wetsuit, taking a surfboard and hopping in after the big rain when we had all the bull sharks,” she says.
Instead, she directs people to follow advice on the Tiara website, to “remember freeze don’t squeeze!”. It advises people to kill the tick where it is using an ether-containing spray. “Then, either wait for it to drop off or seek medical attention for it to be removed.”
It specifically advises against squeezing the tick because this causes the tick saliva to enter the body, which increases the risk of tick-induced allergies. Tick saliva is known to contain alpha-gal, the sugar molecule which is the allergen associated with reactions.
Webb also warns that parents might not even realise their child has a tick bite, as they can be “little nips the size of a pin head”. Tiara advises people if they have been outdoors, “don’t scratch anything that itches until you have a look at it”.
What if you suspect you or your child have this allergy?
The coroner’s report states that the symptoms of mammalian meat allergy reaction “can be gut-based, such as cramping, diarrhoea, or nausea. It can be welts or hives, red swellings in the skin around the eyes or lips or mucosal tissues or tongue. At its most severe, it can result in anaphylaxis with respiratory or cardiac compromise.”
However, Van Nunen says the allergy can be confusing for people to work out because often the symptoms only occur three to six hours after eating meat. That is the time it takes to digest the food and for the alpha-gal to be released.
Webb adds that it is important to consider reactions not only after traditional mammalian meat meals, but also food like marshmallows that can contain mammalian products like milk and gelatin. She also warns that meat particles in the air can also trigger reactions, even if the person doesn’t consume meat, as it did for Jeremy.
Currently, there are no skin or blood tests for allergen specific to the antibodies to confirm a diagnosis of tick allergy, according to the Australasian Society of Clinical Immunology and Allergy (Ascia). However, Ascia says researchers have identified allergy tests shown to be positive in most people with mammalian meat allergy after a tick bite. They include testing for alpha-gal while blood tests for a mast cell tryptase level can help understand the level of risk for more severe reactions, and differentiate between asthma and anaphylaxis.
What is the relationship between asthma and anaphylaxis?
It can be hard to differentiate between asthma and anaphylaxis, Webb says; often they are co-occurring, as they were for Jeremy. His family sought medical assistance a number of times when he suffered from severe respiratory distress, which was diagnosed as an asthma attack, despite several features that were unusual for asthma, the coroner’s report stated.
If someone has sudden severe asthma, consider whether it’s anaphylaxis, Van Nunen says. Even if a person doesn’t necessarily have much asthma in between times, the majority of food allergy deaths (85%) are caused by anaphylaxis triggering asthma, she says.
Webb emphasises that if someone is concerned, they should advocate for themselves or their child in an emergency department to get immunology tested and for the healthcare providers to investigate differentiating between problems of breathing and anaphylaxis.
Webb says that even before someone gets the allergy confirmed, “what they can do is just refuse to leave the hospital until they’re given an auto-injector [EpiPen], which is adrenaline that they can give to themselves or give in case they have an anaphylaxis after they leave the hospital”.
If people are trying to advocate to get their healthcare professional to consider mammalian meat allergy, Webb recommends showing them the coroner’s report on Jeremy’s death or the articles about it.
During his 16 years Jeremy was inspirational for his family “in terms of his love of life and adventure”, Webb says. “I’m just amazed that he continues to make a positive difference, even though he’s not here.”
“He’s the one that gives me strength,” Webb says.
