July 24, 2010
Experts insist Australia has no problem, writes Kate Benson, but try telling that to victims.
It is less than a third of the width of a human hair but it has created a furore in Australia, dating back decades.
According to the federal government, the microscopic Borrelia burgdorferi bacteria, known for spreading lyme disease, does not exist in Australia.
It insists that those diagnosed must have been bitten by infected ticks while travelling in Europe or the United States, where lyme is common. That view is based on a 16-year-old study by Sydney researchers who found no evidence of Borrelia burgdorferi in more than 12,000 ticks collected from the length of the NSW coast.
Karl McManus ... died last week.
The team, led by Richard Russell from the department of medical entomology at Westmead Hospital, did not even find ticks carrying bacteria which could cause a lyme-like syndrome. ''The family of ticks is not here. They weren't here then and they wouldn't be here now,'' says scientist David Dickeson, who took part in the study.
But that view is challenged by victims who insist they have caught the disease within Australia. Some, such as Mualla Akinci, whose husband Karl McManus died last week from lyme complications, want recognition for sufferers and more advanced testing procedures. Others, such as Anthony Brown, who contracted the disease from an infected dog, want a public health campaign to warn people of the dangers.
''People with lyme disease are being misguided, mistreated and ignored,'' Akinci says. ''They are being left in the corner to suffer and die. Nobody wants to know about them and I don't understand why.''
Formerly fit and healthy, McManus, 44, was bitten by a tick while working on the set of Home and Away in Waratah Park, and in the months before his death could no longer lift his head or swallow and was using a message board to communicate.
His claim for workers' compensation was rejected by the insurers Employers Mutual, who wrote to him: ''You have not suffered lyme disease due to the course of your employment … as the diagnosis has not been confirmed and there is no known or proven case in Australia.'' Its decision was based on a medical report by the physician Peter Slezak, a Sydney medico-legal consultant.
But only months earlier Akinci was told her complaint to the Health Care Complaints Commission about her husband's treatment at Hornsby Hospital could not be investigated because there were no lyme disease experts in Australia.
''So if we have no lyme disease experts here, how was it decided he didn't have lyme disease?'' she asks.
Anthony Brown, 54, from rural Victoria, tested positive for lyme disease in 1988 after a friend, travelling with a dog, visited him from Cairns. Brown, a special needs teacher, had never travelled overseas - he'd never even been to NSW - but the visiting dog was riddled with ticks.
''I lived a very quiet, contained lifestyle, but a few weeks after that dog arrived I was very, very sick for many years.''
His case was so unusual that his GP wrote about it in the Australian Family Physician journal in 1990.
But experts still remain divided on the disease's legitimacy in Australia. NSW Health concedes the tests to diagnose lyme are ''technically complex'' and rarely definitive, and ticks here could be carrying unknown infections which manifest similarly to lyme disease. Dickeson agrees: ''There are ticks out there carrying things no one knows about.''
But for now he remains certain lyme is not among them. ''I test a couple of thousand people a year and get a positive result about once a month. And I can tell you that every one of those had a travel history to the northern hemisphere.
''We've never had one person who contracted it locally.''
For Akinci, her husband's funeral yesterday marked the beginning of a long campaign.
She is selling her $2.5 million Turramurra home to fund a lyme disease research foundation and has a message for the authorities: ''Stop telling people this doesn't exist before someone else dies.''
Quoted from website: http://www.smh.com.au/national/lyme-mystery-ticks-all-the-boxes-20100723-10ora.html
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