SBS World News Radio: More Australians saying they have Lyme disease
A Senate inquiry has heard an increasing number of Australians say they are experiencing symptoms of Lyme disease.
Many doctors have long denied the presence of the disease in Australia, saying ticks in the country do not carry the correct pathogens.
Now, researchers are calling for new studies to potentially redefine the illness and improve treatment.
It is a debilitating illness, characterised by fatigue, fever and headaches -- a bit like having a very bad case of the flu.
Sufferers with chronic levels of Lyme disease experience a loss of vision, ringing in the ears and severe muscular pain and cramps.
One patient, Lisa Gumieniuk, says, at the worst point of her illness, she could not remember her husband's name.
"I haven't been able to work for the last year and a half. I used to cycle for 40 kilometres on a Saturday morning. And it got to the stage where I couldn't even walk up three steps without having to take a breath."
Lyme disease is hard to diagnose because, often, people do not notice, nor remember, being bitten by a tick.
Now, increasing numbers of people are seeking antibiotic treatment for symptoms associated with Lyme disease, and doctors are concerned.
Australia's Lyme Disease Association spokeswoman, Sharon Whiteman, who also suffers with the illness, says the definition should be expanded.
"Our surveys show that, on average, Australians are 10 years to diagnosis. Internationally, they're broadening the umbrella definition of Lyme disease, so, for us, if they want to call it a different name, it doesn't really matter. What we want is treatment prioritised for patients."
The medical industry says it is not possible to contract Lyme disease in Australia, so any person with symptoms is treated for what they call "Lyme disease-like illness."
Lyme is caused by the Borellia bacteria, carried by ticks and transmitted to humans when they bite.
But the definition of the disease is based on the North American strain of Borrelia Burgdoferi Sensu Stricto, making all other strains of Borellia bacteria technically not Lyme disease.
Microbiologist Stephen Graves has told a Senate inquiry doctors often do not have access to the correct tests to diagnose their patients.
"The average run-of-the-mill doctor thinks that Lyme disease does not exist, and, (if) their patient has not been overseas, then they won't put that down. They'll look for some other diagnostic test to get the diagnosis. But a lot of doctors do ask for Lyme disease testing because they do not accept that it is not here."
Australian tennis champion Samantha Stosur overcame Lyme disease in 2007 after being bitten by a tick in Paris.
Like many sufferers, she was initially diagnosed with something else -- in her case, measles.
She recently told the SBS Insight program it was a difficult journey, even with her elite fitness level.
"(I) just started really slowly with my training again, which was about a 20-minute walk. So it was about 10 months from when I first really noticed something to then when I was back competing again."
Patients are now calling on the Australian medical community to stop arguing over the name of the disease and move their focus to treatment.
Jesse Chadwick is currently being treated for what is deemed a "Lyme-like illness," and he says the time for debate is over.
"Stop debating the issue and start actually treating the issue. We patients are the evidence. We have our experiences. And people need to hear these stories, because there's thousands of them."