BATTLE AGAINST DISEASE - AND SCEPTICISM
May 8, 2010
Recognition, then treatment... Natalie, Matilda and Steven Young. Photo: Frank Redward
Officially, the illness stalking a family does not exist here, writes Julie Robotham.
THE soles of Matilda Young's feet hurt and she has trouble catching her breath after her frequent coughing attacks. At night, she drenches her bed with sweat.
But the disease with which the three-year-old has been diagnosed does not exist in Australia, according to the Health Department, leaving Matilda and her parents alienated and battling for recognition and treatment.
The Coffs Harbour family is at the sharp end of an academic battle over Lyme disease, a bacterial infection spread by ticks, which causes fever, headaches and a rash and can travel to the joints, heart and central nervous system if untreated.
Officially, no case has been transmitted in Australia and the organisms that cause it - three species of the genus borrelia - are not carried here by wildlife, livestock or their parasites.
But the Youngs - mother Natalie has also tested positive and and father Steven's test was equivocal - confound that dogma because they have not been to the United States or Europe, where Lyme is common.
Ms Young believes she was infected while working as a field officer for the National Parks and Wildlife Service. ''I was 100 per cent in the bush. I did a lot of bushland regeneration stuff,'' said the 34-year-old, who can no longer work.
She estimates she has had more than 300 tick bites. On one occasion in 2002, she was bitten 110 times.
The Youngs believe Matilda, diagnosed last week, was infected during pregnancy, though experts say this is unlikely. ''I've done this to my own child and it's terrible,'' said Ms Young. ''I've been bawling my eyes out, thinking, 'What have I done?'''
But Stephen Doggett, a senior scientist at Westmead Hospital's Department of Medical Entomology, remains sceptical. ''There's not one piece of scientific evidence to say it occurs in Australia,'' he said. ''There
are reputations built on the existence of Lyme disease in Australia. People are embarrassed … to admit it's not here.''
He said positive results came from tests performed using techniques not sufficiently specific to borrelia - people might be infected with a different organism. The bacteria live inside the host's cells so they cannot be independently cultured - testing instead looks for antibodies or borrelia DNA. The Youngs have had both types of test, at laboratories here and overseas.
Andrew McDonald, the NSW parliamentary secretary for health, advised Mr Young to have his positive sample retested at ''a reference laboratory … using appropriate methodology''.
The Health Minister, Carmel Tebbutt, wrote to Ms Young that the relevant species ''have not been isolated in surveys of ticks collected in south-eastern Australia. Until there is solid evidence to indicate that locally acquired Lyme disease is a significant public health matter in Australia, specific measures to educate the general public or clinicians are difficult to justify.''
But Tim Roberts, from Newcastle University's School of Environmental and Life Sciences, says positive tests should not be dismissed, because patients' symptoms usually tallied with a history of tick bites.
''I think it's likely to be in some reservoir species in Australia,'' he says. ''If we look hard enough we'll find it. It's always difficult to get a new disease recognised.''
Associate Professor Roberts said some doctors resisted the idea of Lyme disease because treatment required antibiotics, often taken long-term - anathema to clinicians trained to prescribe them sparingly to prevent the spread of antibiotic-resistant bacterial strains.
Stephen Graves, the director of microbiology at the Hunter Area Pathology Service, said he had enormous sympathy for people like the Youngs, faced with a positive diagnosis that was then denied by doctors.
''Medicine's not all-knowing,'' he said. ''The majority school of thought is that there is none but … absence of evidence is not evidence of absence. My position at the moment is that it's not here but I'm happy to change my mind. If you get a patient who clearly has Lyme disease that settles it, doesn't it?''
Natalie had hundreds of tick bits as a National Parks and Wildlife Service officer."
Quoted from: http://www.smh.com.au/nsw/battle-against-disease--and-scepticism-20100507-ujot.html
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