Tonight I'm going somewhere dangerous. I'm not surfing a giant wave, diving with Great Whites or tracking rhino on foot. I'm going to my son's 16th birthday celebration, in a restaurant. Each year we follow the ritual of dining out, making the trek across the harbour to Bondi Junction to his favourite Mexican eatery. The only thing that will pass my lips is a cool slurp of mineral water. I don't dare eat.
About a year ago I was bitten by a tick and my head swelled up like the elephant man. It took a week for it to settle back down. Thinking this wasn't typical of a tick bite, I went to three doctors who all dismissed it. Unsatisfied, I did exactly what you're not supposed to do – I turned to Dr Google and despite the naysayers, I found what I was looking for: a diagnosis.
I visited yet another doctor and asked to be tested for the Alpha-gal allergen, which causes a mild to life-threatening reaction to mammalian meats such as beef, pork, lamb, kangaroo, goat and venison.
The tests came back positive. I was highly allergic to beef and also moderately allergic to dairy. I had never been allergic to anything in my life.
Alpha-gal is a sugar carbohydrate found in all mammals except apes and humans. It's found in every part of the mammal including their fur and that means someone with Alpha-gal can have a reaction to the fumes of meat that is being cooked, the feel of leather, washing with a shampoo which uses animal derivatives or taking a drug or vitamin with an animal derivative.
Alpha-gal affects each of its sufferers differently. Some are able to eat meat and have no reaction. Some can eat meat a few times and then suddenly be rushed off to hospital. Some people can eat dairy, some can't. Some can eat other animals. Some are so sensitive they cannot travel on planes because of the smell of the meat. Some can't wear leather. Some react straight away, some take up to eight hours. There is no one in Australia that has yet been cured of this allergy.
Whilst Alpha-gal sufferers can eat fin and feather as these are not mammals, there is a huge risk of cross contamination if you are eating food you have not prepared yourself.
That's why I mostly eat fresh fruit and vegetables or shop at vegan shops, so I don't have to worry about inadvertently consuming something that could kill me. I don't eat out either, unless it's a vegan restaurant. It's just easier that way.
But I still have to read every ingredient of every beauty or cleaning product that I go near. I have to be able to translate that something such as magnesium stearate which is used in many tablets, capsules and powders to make them slide down your throat more easily uses mammal derivatives (in this case, animal oils).
I dread having to take medication because it means sitting on the phone for hours speaking to companies who think you are some corporate spy after their mysterious formula. They are about as willing as Mr Krabs (from the Sponge Bob cartoon) would be to part with the secret ingredient for his Krabby patties. It takes persistence.
The relationship between tick bite and Alpha-gal allergen was discovered by Chatswood-based allergist, Dr Sheryl van Nunen in 2009.
r van Nunen, a senior staff specialist in the Department of Clinical Immunology and Allergy at Royal North Shore Hospital in Sydney, sees one to two new people each week who have Alpha-gal. It is estimated that in Australia around 5000 people now have this allergy.
Unfortunately there's not much information about this allergy and many doctors know nothing about it. Many people who have it have been misdiagnosed. Jana Pearce from Sydney's North Shore who contracted the allergy in 2010, is one of them. Her first anaphylaxis was initially treated as heart failure, she says.
"As there was nothing wrong with my heart, I was discharged with unknown cause," Pearce said.
"If it wasn't for Dr Sheryl van Nunen contacting me as I was being discharged and then diagnosing me, I would have gone home none the wiser and might have died, if I'd continued to eat mammalian meat."
The majority of my information has been gleaned from other sufferers on the international Alpha-gal Facebook page that has members mainly from the US, but also Austria, Switzerland and of course Australia. It's an interesting community of sufferers. Many in the US are forever being taken off to the emergency department because they can't resist fried chicken, a steak or bacon.
Whilst I miss eating out with friends and family, I feel grateful I have this allergy in 2016 where there are incredible vegan restaurants, from yum cha to pizza, and the food is even better than their carnivore counterparts.
The supermarket is filled with plant based milks and online shopping for vegan vitamins is easy. I have lost 12kg and my diet has much less chemicals in it than before. On an average day I'll have at least two cold pressed vegie juices with ginger (one at breakfast and one mid-afternoon), coconut milk with vegan protein powder for lunch, and roast vegetables for dinner. Snacks consist of popcorn, fruit, lentil chips and dark chocolate with over 70% cocoa, which is vegan.
Recently, my husband and I celebrated our wedding anniversary at a vegan pizzeria and dined on the tastiest pizza I have ever had – a woodfired base topped with cauliflower puree, artichokes, pinenuts, capers, currants, garlic, parsley and extra virgin olive oil, accompanied by vegan beer and finished with vegan tiramisu. Whilst we had to queue for this taste sensation, it was worth every minute. Afterwards, we made our way to a vegan gelato bar and found room for a Belgian salted chocolate and hazelnut cone. Clean, green and cruelty-free. And for me, allergy-free.
Here is how to remove a tick safely:
For small ticks (larvae and nymphs), use permethrin cream (available at pharmacies).
For adult ticks, freeze them with an ether-containing spray (available at pharmacies).
Wait for the tick to drop off or remove it taking the utmost care to not compress the tick (as this will squirt allergen, toxin and possibly infection into you).
Don't use household tweezers.
source: TIARA (TICK INDUCED ALLERGIES RESEARCH & AWARENESS)