Laura France was diagnosed with Lyme disease late last year following tests done on her blood in the US.

Her family and several doctors are convinced she has the illness, a bacterial infection spread by ticks, but NSW Health disagrees.

The department says the disease does not exist in Australia and will not fund any treatment for it.

The family is paying $3000 a month for medication typically used to treat Lyme disease.

The bill includes an antimalarial drug that costs $1200 a month and is being used to treat a Babesiosis co-infection common in many Lyme sufferers; antibiotics that cost up to $400 a month; and $500 for herbal medications designed to detox Laura's system and doctors' bills.

Laura has trouble walking, struggles to catch her breath, suffers from severe headaches and is lucky to make it through a full day of school.

Michelle France said that at night her daughter had trouble sleeping, cried and complained of constant aches and pains.

"On a daily basis, it's hard; we have had to buy a stroller to get her around, she is exhausted after walking short distances," Mrs France said.

"It's bad enough that Laura is sick, but the battle to find help has been a nightmare."

Since the December diagnosis the Frances have found themselves thrust into an academic battle over Lyme disease.

The illness has reached epidemic proportions in the US, with up to 20,000 new cases diagnosed each year. Left untreated it can become crippling.

The first reported case of Lyme disease in Australia, based on clinical symptoms, was from the Hunter in 1982.

According to the NSW Ministry of Health, Australian animals do not carry the bacterium that causes Lyme disease, the microscopic Borrelia burgdorferi.

It says occasional positive tests for the disease in NSW are from people who have picked up the infection overseas. Laura has never left Australia.

A Health Ministry spokesman told the Newcastle Herald the US laboratory where Laura's blood was tested was not validated for use in Australia. Her NSW test for Lyme disease came back negative.

Experts agree the bacteria that causes Lyme disease often fail to show up in blood tests, can hide in other parts of the body and false negatives or false positives are common.

GP Peter Mayne, who is treating Laura, said NSW Health had its "head in the sand".

Dr Mayne published a paper in the International Journal of General Medicine last year detailing at least 28 positive tests for Lyme disease from Australian-based patients, most of whom had never travelled abroad.

"The proof is irrefutable ... there are a very considerable amount of unrecognised and undiagnosed cases in Australia," he said. "The problem is far greater than anyone has acknowledged."

Laura's test results have been reviewed by controversial US-based paediatrician Ray Jones, who has treated more than 10,000 children for Lyme and chronic Lyme disease.

Dr Jones confirmed Laura's diagnosis and urged her parents to travel to the US if appropriate treatment could not be found in Australia.

Friends of the France family are hosting a trivia night at Hexham Bowling Club on March 17 to raise funds for Laura's treatment. For more information call 0417221317 or email lymelaura@gmail.com.

Newcastle Herald