Inquiry to help Northern Rivers Lyme disease sufferers

INDEPENDENT Senator John Madigan has described Australian Lyme disease sufferers as "medical refugees their own country" in a blunt rebuke of the Australian medical system's failure to treat the growing Lyme medical crisis.

Senator Madigan, who is leading a parliamentary inquiry into the existence of a Lyme-like illness in Australia, spoke in the Senate after presenting a petition of 41,000 signatures to Health Minister Sussan Ley appealing for recognition of the disease in Australia.

He said despite Australia having world-class medical technology and three recent Nobel prizes in the field, our leading medical facilities were "more likely to find a rare genetic disorder than Lyme".

"Because we use draconian and inferior diagnostic tests, many people do not even know they have the disease, in spite of clear clinical symptoms."


Upper Main Arm resident Mahalia Bennett-White, 21, said she contracted what she believed was Lyme two years ago and was "laughed at" by one doctor until she found a GP willing to treat her.

Her symptoms included lethargy, nausea, and lack of appetite for prolonged periods.

"She just knocked me back straight away and laughed at me, it feels really bad having someone do that to you," Ms Bennett-White said.

"I have had a neighbor who suffers from Lyme disease quite badly. She got me to her doctor and got me on some antibiotics and medication and got me back to health in two to three months.

"I was lucky to have someone around me who knew it well.

"The second doctor I saw said it was lucky they go on top of it because things like this once they do get bad it's really hard to turn it around.

"I feel if there were more doctors out there open minded willing to listen not just blatantly turning them back… it would make it easier for Lyme patients."

"It is out there, it is a real thing."

Is enough being done for Northern Rivers Lyme disease sufferers?

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Current overseas evidence suggests Lyme disease needed to be fought with prolonged, multi-antibiotic medical regimes which invariably required long-term medical supervision, similar to established treatment for tuberculosis.

In his address Senator Madigan said because of Australia's dismissive attitude to the disease's existence, it was not possible here.

"Once Lyme is accepted, it can be diagnosed. Once it is diagnosed, it can be treated. Right now, none of these things are being done in this country, except by a small handful of doctors.

"Recently I attended a funeral in Queensland for a young man who took his own life.

"One of his final acts was to make a submission to the Senate inquiry into Lyme disease and Lyme-like illnesses. He did this, drove to a park away from friends and family, and then hung himself because of the hopelessness of his situation.

"Families are being brought to the edge of bankruptcy because they are being forced to seek out high-costing treatment overseas in an effort to help their loved ones."

Senator Madigan has called for prolonged treatment for Lyme patients, long-term monitoring of patients, more research and education on ticks and the unique native strains of the borrelia bacteria they carry which can cause Lyme.

"We have a treatable disease here which has been overlooked by the bureaucracy," he said.

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