"Don't disturb that tick," writes Vivianne Vandenberg, who had an anaphylactic reaction to a tick bite. It has completely changed her life and relationship to the outdoors.
24 Oct 2016 - 4:48 PM  UPDATED 14 Nov 2017 - 9:44 PM

I'm scared of grass - of all foliage, really. It is such a strange experience, when I've been a bushwalker most of my adult life. I will never sit on the grass again.

While bushwalking with friends at Currarong in 2015,  I was bitten by a tick. When my friends removed it, we thought we knew what we were doing. I'd had a few ticks before - no big deal, no big reaction.

But this time, as the tick was being taken out, it injected its saliva into me. Within a couple of minutes, without warning, my immune system said NO (to the protein in the saliva). I remember a feeling of warmth, then the most terrible feeling of impending doom - I never want to experience that moment again. I said, 'I feel strange, I can't see ...' That was it. No time to even say 'help'.

My blood pressure dropped to zero, and I collapsed, unconscious. They couldn't find my pulse. Level four anaphylaxis.

My friends called triple zero and tried to resuscitate me. They were freaking out apparently! Ambos and other rescue services all came from Milton-Ulladulla. The paramedics pumped a lot of adrenaline into me, twice. Once I was stabilised, I was taken to hospital with IV steroids overnight. There was a risk of a secondary anaphylaxis.

My blood pressure dropped to zero, and I collapsed, unconscious. They couldn't find my pulse. Level four anaphylaxis.

It was like a soft sledgehammer. Over the next weeks, I began to realise how much this incident now dictated how, where and with whom I would live. At first I was very afraid to be alone. It took a long time to come to terms with it.

I carry EpiPens at all times, and when I'm outdoors I have a lot of DEET insect repellant on. I tuck my jeans into my socks. I rarely wear shorts or singlets - usually long sleeves, hats. The possibility of a tick being somewhere near me is always on my mind.

If I feel an itch - I'm not to scratch it - I have to use mirrors to check, because if it is a tick and it's at all disturbed, that will probably be the end of me. In the future, if I'm bitten by a tick, I probably won't survive. Even a teeny baby tick - nymph, or grass tick.

So, I have to leave the South coast - in fact, I can't live anywhere on the east coast of NSW where the paralysis tick, Ixodes Holocyclus, is endemic.

Probably I will eventually live in Tasmania - it seems to be pretty safe though there is a similar tick there (Ixodes Cornuatus).

In the future, if I'm bitten by a tick, I probably won't survive ... So, I have to leave the South Coast - in fact, I can't live anywhere on the east coast of NSW.

I've had to move away from my home of 30 years, my family, my friends and neighbours. I can't bushwalk anymore, and so I've lost contact with all those people.

People don't believe me. The first thing I say is: I'm NOT pretending.

But I'm lucky. My problem is quite simple in some ways: I'm perfectly fine - I just can't get bitten and I need to be resolute about avoiding ticks.

I'm incredibly fortunate, I have choices, and my wonderful partner has options where he can work anywhere. So we can go, find somewhere that feels safe to live.

I cannot imagine how people who have acquired the MMA - mammalian meat allergy - cope. This is where they've also been bitten by a tick, but there is a delayed reaction to eating meat which can also bring on anaphylaxis. And meat, or by-products are found in an incredible range of products. This is a truly Russian roulette lifestyle - imagine not knowing if the next thing you eat could kill you - things such as wine, juice, a marshmallow, medications, a spoon used to stir a stew and inadvertently used in that 'safe' vegetable dish. I can't get my head around that one.

Ticks are increasing - the temperature is rising so more are breeding. They love bandicoots, mulch, moisture and lantana. More people are bushwalking, and more people are bringing the bush into their gardens.

It's vital that awareness of the dangers of these tiny little things. People need to be educated about how to remove them - tweezers are the worst thing you can do - it is vital that the tick die instantly on the body. Only a spray such as Wart-Off or Medifreeze can do this. Or get to a doctor or a hospital as soon as possible . Don't disturb that tick - it's so mysterious and random, no one knows what effect that tick bite will have on them. 

A version of this piece originally appeared in Mamamia.

Further reading
Tick Sick
How sick can you get from a tick?
What is Lyme disease and does it exist in Australia?
Debate about Lyme disease and its presence in Australia has occupied the minds of scientists and health professionals for more than three decades.
Lyme disease: a ticking time bomb
While debate about the presence of Lyme disease in Australia rages, its threat remains very real in other parts of the world.