His cause was helped by one doctor, who ignored the official line that the disease isn't here.

Now other sufferers are expected to take action.

As a gardener at a Coffs Harbour Resort, Robert Sotur was bitten by ticks at least 500 times over ten years.

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He saw dozens of doctors and a neurologist, and they all said the bites meant nothing. But he wasn’t convinced, and kept notes and photographs of the tick bites on his body.

“After so many years, they finally realised it's a Lyme like illness - it's Lyme disease,” Sotur said.

That documentation has led to one of the most significant wins for Lyme disease sufferers - acknowledgement by a Government body. The father of two won a Workers Compensation claim.

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“I think they sort of realised that I got sick due to work from the ticks, and basically accepted that,” he said.

It was a Government Workers Compensation payout for a disease the Federal Government, the Australian Medical Association and State Governments all say doesn't exist in Australia.

“They've got to really get their heads out of the sand, and acknowledge that it's here, because people are getting very sick and dying,” Sotur said.

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In Sotur's case the facts were irrefutable. He's never left Australia, yet after the tick bites he got on the North Coast, he's now riddled with Lyme disease.

Sotur says he is “constantly itchy, with rashes, nausea, bloating, headaches, vision loss, the cough - the list goes on and on.”

The medication is what some argue fiscally keeps Government heads in the sand. Sotur, now in the chronic stages of the disease, is prescribed a drug that lasts just three weeks, and costs $1,000.

It seems Lyme disease in Australia is a political and economic ‘genie in a bottle’, and slowly the lid's coming off - especially when brave doctors like Gull Herzberg brake from the medical code of silence on and bravely speaks out.

“Yes Lyme disease is in Australia. I've seen people with symptoms, had test results that they have Lyme disease, and have responded to Lyme disease treatment. I'm using international testing, I'm using protocols that come from overseas, I'm seeing people improve,” Dr Herzberg said.

Based outside Coffs Harbour, in a little town called Bellingen, he dedicates every Thursday at his practice to seeing only patients with Lyme disease. The humid, hot climate there makes it prime tick territory.

This doctor is taking a career risk just by speaking out.

“It's certainly potentially a very, very big issue, because if lots of people have it, then it's expensive to test for it and expensive to treat it. It takes a long time to treat, and there's no easy answer,” Dr Herzberg said.

This fight is gathering momentum and demanding to be heard.

“There needs to be an acceptance that there are many people within our community that are having symptoms that are Lyme or Lyme-like, and Governments need to take these people seriously. They need to commission the research, and they need to determine whether or not this disease, or a disease like it, exists here in Australia,” Newcastle lawyer David Jones said.

He's currently representing at least 50 clients with Lyme Disease - patients who have never left Australia, but caught it here - many through their work. .

Joanne Edgar was eight when she was bitten while on her father's cattle station outside Rockhampton.

“I had a long time, even while I was on the penicillin, before I even started to pick up. I had a bed outside my classroom, so I could just lay there and listen to the class,” she said.

Her mum wouldn't give up. After many doctors said there was nothing that could be done, she found a rare GP who had the foresight to send Edgar's blood sample to the United States. It came back positive.

“I'm baffled as to why they would want to ignore this. There could be a lot of expense in treating it, but there's going to be a lot more if they let people just keep going until they get to the chronic stages. If they were to treat it early enough, people would be cured,” Edgar said.

Lyme disease is taking its toll on her health. She's just 32, but the medical scientist has resigned from her job as she's too sick.

“They're sending people home to die. It is not right, and they're going to have a lot more people. The disease isn't going to stop just by ignoring it. They need to start listening and acting on it, because there are people dying from it,” Edgar concluded.

• Lyme disease factsheet - www.health.nsw.gov.au
• Karl McManus Foundation - www.karlmcmanusfoundation.org.au
• IGeneX, Inc. - www.igenex.com