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Australians With Lyme Disease 'Being Treated Worse Than A Dog Riddled With Mange'
Wednesday 13 January 2016
Australians with Lyme disease 'being treated worse than a dog riddled with mange'
HAYDEN COOPER, PRESENTER: Lyme disease has long been a controversial issue with doctors at odds over whether the tick-borne condition exists in Australia. But a Senate inquiry on the topic could soon change that. The investigation will consider the diagnosis and management of Lyme-like illnesses, as well as claims of bullying within the medical community directed at doctors who treat the disease. Tonight, one medical professional speaks out for the first time, as Andy Park reports.
ANDY PARK, REPORTER: Tim spends his life in the bush. Today, the New South Wales forestry worker has to cut across the state forest to do some maintenance work. It's the part of his job that sees him in close contact with the bush. And, all the risks that go along with it.
Forestry workers are in a high-risk category for tick-borne Lymes disease, according to the American Center for Disease Control. These tiny parasites feed on the blood of passing animals and humans, often unbeknownst to their host. Injecting toxins, they cause a tell-tale bullseye mark, and while most tick bites cause little harm, many report symptoms far from it.
Tim, how careful do you have to be about tick bites in your line of work?
TIM LISTON, FORESTRY CORPORATION OF NSW: You definitely have to be careful. That and other insects like mosquitoes and leeches, which is why we're issued with these permethrin-treated clothing.
ANDY PARK: But most Australians don't take such extreme precautions, especially as we flock to the beach and the bush over the summer holidays. And, for hundreds of them, a tick bite can begin a long and painful search for answers about their mysterious ill health, a search they say is made all the worse by the very people that are meant to help treat them.
GENAVIEVE JACKSON, LYME DISEASE SUFFERER: When I lose my vision, it feels like I'm in a dark room with no doors, no windows and it's night-time and you just can't see anything.
ANDY PARK: Vision loss is just one of the troubling symptoms eight-year-old Genavieve Jackson reported after she was bitten in coastal NSW in September, 2012.
GENAVIEVE JACKSON: There was a bump on the back of my shoulder and it was kind of itchy and I went over to my Dad and he said it might be a tick.
ANDY PARK: Her persistent symptom is an intense burning sensation in her legs, sometimes leaving her unable to walk and off school for two days a week on average.
GENAVIEVE JACKSON: I like swimming and I can do swimming even if my feet are sore because I'm not putting pressure on my feet.
MARIE HUTTLEY-JACKSON, GENAVIEVE'S MOTHER: We had 23 different doctors and 20 months of searching before we found out what was wrong. We got to the point we'd seen so many doctors, we called the doctors we didn't like by the number in the sequence of doctors that we'd seen because we didn't think they deserved a name.
ANDY PARK: So how does it feel to be dismissed and denied out of hand by so many doctors?
MARIE HUTTLEY-JACKSON: So, we were pretty devastated by that. We're pretty tough. We weren't gonna sort of just roll over and take that because we knew that wasn't right.
ANDY PARK: Marie did what many patients with Lyme-like symptoms do, ordering blood tests from Germany so she could get her daughter antibiotic treatment. Because, as it stands, Australia's health authorities deny that Lyme disease exists here.
PETER COLLIGNON, INFECTIOUS DISEASES MICROBIOLOGIST: People have looked for Lyme disease, but have not been able to find it by any method that most people would think is acceptable.
ANDY PARK: Because of the fear of disciplinary action, few Australian doctors treat Lyme disease, leaving patients with few medical options. It's a double-edged sword: patients report being dismissed and doctors fear consequences from the medical board.
JOHN MADIGAN, VICTORIAN INDEPENDENT: You know, what is the crime in trying to help people that are coming to you that other doctors have just written off and, you know, your life's falling apart, you're as sick a dog and you can't get any help?
ANDY PARK: Speaking out about his treatment of Lyme patients for the first time, Geneviave Jackson's doctor risks those very consequences.
PETER DOBIE, LYME DISEASE TREATING GP: There are now seven GPs in Australia who've had restrictions placed on them by APRA, which is the national medical board. They've been told by APRA that they are no longer allowed to diagnose or treat Lyme disease. There's only about 20 doctors in the country treating this illness.
ANDY PARK: In the past, I think you've been reticent to speak out. Why are you feeling comfortable to talk about it now?
PETER DOBIE: I'm feeling a little more confident discussing this disease in public now I think because - primarily because of increasing community awareness about the illness and certainly increasing awareness in the media and increasing awareness by politicians now of course with this Senate inquiry as well.
ANDY PARK: Sufferers of Lyme-like illnesses were vindicated by the announcement of a Senate inquiry in November last year.
Senator John Madigan backed the inquiry after receiving support from Marie Huttley-Jackson and the Lyme Disease Association.
JOHN MADIGAN: What I'm hoping for and I'm sure what the people who are suffering are hoping for is that we get some answers, that we open the cupboard door and put some light in some dark corners here and try to get to the bottom of why people are being attacked for presenting with these symptoms.
ANDY PARK: The inquiry will hear about the difference in blood testing approaches. Overseas testing techniques tend to bring back positives, whereas local tests are negative.
MARIE HUTTLEY-JACKSON: Well we want the disease to be recognised. This idea that you can deny a disease exists because the pathology is flawed is nonsense. In my humble opinion, a red tape issue.
PETER COLLIGNON: Well I don't think it's a red tape issue. We've had problems in laboratories including government laboratories where false results get put out.
ANDY PARK: Dr Peter Collignon says overseas tests are unnecessary.
PETER COLLIGNON: I think it's misleading and giving people false hope.
PETER DOBIE: I'm certainly concerned. I think all doctors treating this illness are concerned about possible disciplinary action. However, I feel a - a moral obligation to treat these patients and I will continue to treat them to the best of my ability.
HAYDEN COOPER: Andy Park reporting there.
The above originally appeared here.
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