Tick-borne disease painfully real

Surrounded by debate and lack of clinical diagnosis in Australia, the concept of chronic Lyme disease is one many believe does not exist.

But for Kwinana resident Tanya Dupagne the illness includes taking more than 60 tablets a day, a long list of symptoms that are slowly destroying her body and a life she describes as a “painful nightmare that doesn’t go away when you wake up”.

Ms Dupagne, who is known for her dedication to supporting young people who have been affected by trauma and torture through her Camp Kulin program, last month spoke out about her battle with chronic and neurological Lyme disease — a bacterial infection usually transmitted to humans from the bite of a tick carrying Borrelia burgdorferi.

About 15 years ago Ms Dupagne was bitten by a tick while working at a camp in America — now an epidemic area for the disease.

“We used to go swimming in the lakes and dams — and occasionally we would get bitten by ticks. At the time, I didn’t think anything of it.

“One of the ticks that bit me also injected a bacteria into my bloodstream. That bacteria has made its way through my blood and has been attacking parts of my body for years, including my brain.”

As well as causing extreme fatigue, pain and a list of more than 40 other significant symptoms, the disease has also resulted in several co-infections and co-diseases including fibromyalgia, chronic fatigue syndrome and foot drop.

Despite her symptoms and numerous positive tests, Ms Dupagne has struggled for years to get a diagnosis because of the complexity of the disease’s status in Australia.

“I was made to feel like the symptoms were in my head,” she said.

“Finally I found a doctor who was willing to listen.”

Her blood tests had to be flown to Germany, the testing process alone costing more than $3500. That’s before the high cost of treatment.

“I thought I’d done things right – I have private health insurance, mortgage insurance and income protection insurance. But since I acquired Lyme disease overseas and it isn’t recognised in this country, many of them won’t cover it.”

A friend has since set up a crowdfunding campaign in a bid to help ease the financial burden.

Now a Lyme Disease Association of Australia ambassador, Ms Dupagne wants urgent action for Australian Lyme patients.

“This is a serious illness, it is debilitating, people are dying from it and we need to be talking about it,” she said.

The Department of Health said diagnosis was not supported because the organism had yet to be identified in local ticks.

“However, the Australian Government does recognise that a group of patients are experiencing debilitating symptom complexes that some patients attribute to ticks and is taking steps to address this issue,” the department said.