Lyme disease

Reporter: Clare Brady

Lyme disease -- its existence is medically recognised around the world, millions suffer but get immediate treatment. But here in Australia it's a different story. It's a daily battle for those with Lyme Disease to even be heard.

Australia's brightest scientific and medical minds have been at logger heads for almost two decade over whether or not it's here. Some say without a doubt it is and they can prove it.

It's also known as Lyme Borreliosis, it's an infectious disease with insidious results. Ticks are the major culprits for spreading Lyme Disease -- it lurks in our backyards as well as our bush. These ticks are found rimming Australia's coastline and further inland, wrapping around our map like a horse shoe. A single bite from such a tiny tick can crumple healthy lives into decay.

"I wish I'd never gotten bitten, but at the same time I know that I can get better, I can recover. But it's all about positive thinking and it's going to take at least until my twenties to get my life back", said 17-year-old Hannah Coleman.

She was bitten by a tick carrying Lyme Disease on a Girl Guide camp, three years ago in Sydney's Turrumurra. "Being able to walk is my main goal", Hanna said.

Like most doctors, Hanna's too -- including several neurologists -- didn't believe she had Lyme Disease at all. The official medical line on the disease is that it doesn't exist in Australia.

Her mother sent her blood to America where Lyme disease is prevalent and her results came back positive. "Unfortunately the testing in Australia isn't reliable at all, only 5% of tests come back positive, whereas in America it's a much higher percentage", her mother Nikki said.

Nikki watches in frustration as her daughter daily, doses herself intravenously with antibiotics.

If it's discounted, or not even tested, the future of sufferers can be worse. "It's just very sad that a few people are driving the agenda about Lyme Disease which means that thousands of peoples' lives are destroyed", Nikki said.

With Australian doctors not commonly trained to recognise Lyme Disease as even being here and with the disease itself a most apt chameleon, sufferers can often be misdiagnosed. They then miss the four week window to chance a recovery.

In the process of the tick extracting our blood the bacteria in its stomach is excreted into our bloodstream and it multiplies over and over. Some people may notice an expanding red bullseye rash, get a fever, headache, muscle aches or joint pain.

Symptoms can spread to the nervous system and the heart causing chronic arthritis and nerve damage two or three years after the bite. "If you developed chronic Lyme Disease it will kill you", said Professor Mualla McManus.

Professor McManus has set up the Karl McManus Foundation and self-funds research into Lyme Disease. "I am estimating that there's a high percentage of people who have neurodegenerative disease like motor neuron disease, MS, Alzheimer's and autism, chronic fatigue that actually have Lyme, a high proportion of them", Professor McManus said

She knows the extreme price paid from this disease and its misdiagnosis. Her husband Karl died from complications from Lyme -- he was so sick his tongue was paralysed and he couldn't swallow.

He was bitten by a tick on his chest while working in Duffy's Point in Sydney's north.

Inside a laboratory at Newcastle University, a dedicated team, including Professor Tim Roberts, is toiling away on a fresh independent study -- a collaboration with Sydney University -- to determine whether Lyme Disease is carried by Australian ticks.

Professor Roberts thinks that Lyme Disease is in Australia.

Thousands of ticks are being collected and already he disputes long held theories that Australian sufferers only contract the disease after visiting Europe or America. "What we say and conclude is there is an organism here which is very similar to those two infected organisms, the one in Europe and the one in America", he said.

Some believe in got to Australia from migratory birds that fly all the way from Siberia and nest on our beaches. Then there's another school of thought that it's actually an indigenous strain and it's always been in our country. "I think most of the east coast of Australia, but certainly a very strong indication in the northern beaches in Sydney, ticks everywhere", he said.

Professor Roberts believes what's worse, is many people carry Lyme Disease and don't even know. "A whole lot of people could, certainly absolutely, in the group with chronic fatigue syndrome", he said.

When Belinda Baker was 18 she started working with a vet -- daily pet dogs came in to have ticks removed. Lyme disease lay dormant until she was 28 and pregnant with her third child. "I had misdiagnosis after misdiagnosis, they left me to die. Initially it was MS, I thought I had MS -- my GP, my obstetrician, my neurologist all thought MS, and I had an MRI which usually shows up MS by lesions and mine was clear and they were really surprised, everyone was really surprised", Belinda said.

After seeing four neurologists she struck gold and found a GP with an open mind. "As soon as he saw me he said we've got another one, and I said how do you know and he said the way you walk, the way you speak, everything. He said if you don't have Lyme Disease I'll sell my house that's how sure he was", Belinda said.

Her blood samples were sent to America where Belinda tested positive for Lyme Disease. This mum dreams of simple things other mums take for granted. "Doing their hair, even being able to take them to school and pre-school, being able to change the baby's nappy. I feel so bad not being able to do just the simple everyday things", Belinda said.

"The opinion is that there is no good evidence that Lyme Disease is acquired in Australia at the moment", said Dr Jeremy McAnulty if from New South Wales Health and Protection.

"The other important information is that ticks that carry Lyme Disease overseas aren't present in Australia. so we don't seem to have the right ticks for Lyme Disease in Australia", he added.

For Mualla, for Hannah, for Belinda and thousands of other Australians, it's the medical mystery that needs to be solved for good. "It's so sad that someone can be so sick and denied the basic human right of treatment. You know I've seen people who have died from this disease, unable to get the help they need", Hanna said.

"A tick, something so small, can cause this much damage although in saying that, if it's caught early it doesn't end up like this, and that's the big difference", Belinda said.

For further information, visit the websites at:

www.health.nsw.gov.au/factsheets/infectious/lyme_disease.html

www.karlmcmanusfoundation.org.au