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Patient Stories

Ginette’s story – How a tick bite changed my life and why I’m supporting research

By July 29, 2022June 1st, 2023No Comments

Before experiencing my tick bite, I was competing in Olympic length triathlons and training either swimming, running or cycling on most days. I had even been selected to represent Australia in the Triathlon Worlds and was rated second in my age group at that time.

However, a tick bite in March 1991 completely ruined my health and changed my life.

The original bite resulted in a red bullseye rash but no immediate illness. It wasn’t until a few months later that the symptoms began. It started with an increase in my resting heart beat and before long I was experiencing fatigue, lethargy, muscle weakness, body aches, nausea, crawling sensations under my skin and blurred vision – just to name a few of the symptoms.

By July 1991, I was basically unable to do any aerobic exercise, and this continued for the next 23 years.

I even became so ill that I was forced to take leave from work and eventually by the end of the year retired from Canberra Hospital where I had worked as a pharmacist for 11 years.

Thus began my difficult journey, forcing me to go from doctor to doctor with misdiagnosis after misdiagnosis. It reached the point where doctors began to think I was imagining my symptoms or that there was something psychologically wrong with me.

Ginette speaking at the tick-borne disease research launch

Finally, in 1992 I met a doctor who not only listened to me but took my symptoms seriously.

We tested for Lyme-like Illness but the results were negative – as is the case for the majority of Australian patients given the testing constraints. Nevertheless, I was referred to a specialist in tick-borne illness, and despite the negative test results we started a course of antibiotics which were successful in treating my symptoms. However, as soon as I stopped the antibiotics the symptoms returned and I was once again basically bedridden.

The years went by and I watched my children grow up, marry and have kids of their own – all the while I remained limited by my illness.

In 2011, 20 years after my tick bite, I heard of a validated diagnostic test for tick-borne illness that was available in the US. While visiting family, I was able to have the test administered – it was positive. After 20 years with an unknown sickness, I finally had a diagnosis.

This testing and diagnosis were a crucial step. Although difficult given the controversy over there not being ‘Lyme’ in Australia, my doctor could finally try to properly treat my tick-related illness. 28 years on and I finally have a resemblance of my life back thanks to that diagnosis and my doctor listening to me and devising a suitable treatment plan. Thanks to him I can once again regularly swim, walk dogs, play golf and do pilates.

In short – I have my life back.

The lack of validated diagnostic testing in Australia leaves patients with tick-borne illnesses confused and lost in a system that ignores them. It is for this reason that my family and I, through the Snow Foundation, have chosen to support this research.

It is essential that patients have access to scientifically validated testing and treatment options in Australia.

To learn more about the tick-borne disease research project, please click here.

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