Thousands suffer from it, and the symptoms are devastating, and often fatal.
It can be easily treated if caught early, but Australia's brightest scientific and medical minds have been at loggerheads for almost two decades over whether or not it's here.
The existence of Lyme disease is medically recognised around the world, and although millions suffer, they can get immediate treatment.More stories from Today Tonight
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 loggerheads for almost two decades over whether or not the disease is here. Some say it is without a doubt, and they can prove it.
The disease, also known as Lyme Borreliosis, is an infectious disease with insidious results.
Ticks are the major culprits for spreading Lyme disease, and it lurks in our backyards as well as our bush.
The ticks are found rimming Australia's coastline, and further inland, wrapping around our map like a horseshoe. A single bite from such a tiny tick can crumple healthy lives into decay.
Hannah Coleman was bitten by a tick carrying Lyme Disease on a Girl Guide camp, three years ago in Sydney's Turrumurra.
“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,” the seventeen-year-old said.
“Being able to walk is my main goal.”
Like most doctors in Australia, Hannah’s doctors, 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 five per cent of tests come back positive, whereas in America it's a much higher percentage,” her mother Nikki said.
Every day Nikki watches in frustration as her daughter 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, sufferers can often be misdiagnosed. They then risk missing the four week window to chance a recovery.
In the process of the tick extracting blood, the bacteria in its stomach is excreted into the victim’s bloodstream, and it multiplies over and over.
Some people may notice an expanding red ‘bull’s-eye 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.
Professor Mualla McManus has set up the Karl McManus Foundation and self-funds research into Lyme disease.
“If you developed chronic Lyme disease it will kill you,” Professor McManus.
“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,” she 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 it 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.
Professor Roberts believes that 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 eighteen she started working with a vet. Pet dogs came in daily 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,” Baker 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,” Baker said.
Her blood samples were sent to America, where Baker tested positive for Lyme disease.
This mum now dreams of simple things other mums take for granted.
“Doing their hair, even being able to take them to school and preschool, being able to change the baby's nappy. I feel so bad not being able to do just the simple everyday things,” she said.
“The opinion is that there is no good evidence that Lyme disease is acquired in Australia at the moment,” Dr Jeremy McAnulty from New South Wales Health and Protection said.
“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.
However for Mualla, Hannah, 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,” Hannah 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 concluded.Contact details
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