At her lowest point, Chloe Cox-Haines just wanted it all to end.
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For months, she had woken up each day in debilitating pain.
She no longer recognised herself as a vibrant young woman; an athlete, a teacher.
In February 2016, she was a month into her dream job as a teacher when she began to suffer extreme fatigue.
That was followed by an incapacitating flu, an acne outbreak, and a weight gain of 10 kilograms in six weeks – unusual for a marathon runner who trained daily and ate carefully. Miss Cox-Haines, now of Burnie but originally of Launceston, sought medical help.
On her first doctor’s appointment, she was told that what she was experiencing was “all psychological”, and that she was lying to herself about what she was eating; that she was in denial about her weight gain.
Over the next four to five months, she would go on to see 20 doctors, all of which gave her different diagnosis that didn’t quite fit: chronic fatigue syndrome, fibromyalgia, and a form of multiple sclerosis.
“So many people labelled me with anxiety and depression, but how can a body feel so bad?” Miss Cox-Haines said.
“I was bed ridden for eight months. I didn’t have a single highlight in my life.”
It wasn’t until she saw a specialist in Melbourne that she found a name for what she was living with: Lyme disease.
Lyme disease is an illness caused by bacteria, and is transmitted via tick bites – Miss Cox-Haines recalled immediately that she was bitten by ticks during a summer gardening session at her Burnie home.
Her relief was instantly clouded with more questions. Lyme disease is not officially recognised by the Australian government, meaning there are no treatment paths, no specialist doctors, and no cure.
But she has found hope: Cyprus. The Mediterranean island offers an unorthodox but cutting-edge treatment for Lyme disease patients whose disease has progressed past the point of antibiotic treatment.
She will fly out for the treatment at the start of July. Until then, she continues to undergone hyperbaric oxygen treatment in Melbourne, which helps to alleviate the inflammation in her body. It comes a cost of $20,000 a round.
“Cyprus is my goal, that’s where I’m going, and how I want to get my life back. To be an athlete again, a teacher, and not wake up every day with pain,” Miss Cox-Haines said.
Miss Cox-Haines has turned to crowdfunding to be able to afford her treatment in Cyprus via GoFundMe as Help Chloe bite back against Lyme.
The state of Lyme disease in Australia
It is estimated that Lyme-like disease affects about 426,000 Australians, the nation’s peak association for the disease says.
However, it is difficult to find exact figures around the prevalence of the disease, because it is not officially recognised by the Australian government, or the medical profession, Lyme Disease Association of Australia president Sharon Whiteman said.
There was a senate inquiry in Lyme-like illnesses in Australia in 2015, however it lapsed with the 2016 dissolution of the government and subsequent federal election.
The inquiry drew more than 1200 submissions, which Ms Whiteman said were mostly from patients.
Ausrtalia’s chief medical officer Brendan Murphy provided a statement at the conclusion of the inquiry, stating that the organism that causes Lyme disease has not been detected in Australia.
Tasmanian Independent senator Jacqui Lambie has added her support for further research into Lyme disease in Australia.