Living with Lyme disease
Getting Lyme disease back on the agenda
Lyme is the most common tick-borne disease in the northern hemisphere and is caused by Borrelia bacteria entering the body through a bite from a tick.
The illness can affect many organs and other body systems and has been known to mimic other illnesses such as lupus. The ticks often transport other diseases into their victims, which places more strain on the immune system.
The disease is both insidious and cruel.
Sufferers can experience uncontrollable convulsions, unrelenting nausea, constant leg tremors and agonising joint pain.
The existence of Lyme disease in Australia has been consistently refuted by doctors and in 2014 a clinical advisory committee identified a lack of stringency in testing procedures in Australia.
People diagnosed with the condition have had to travel as far as Germany for treatment because in Australia, treatment for Lyme disease is not funded by the Australian Government.
It costs hundreds of thousands of dollars. And it takes an incredible toll on the body.
Tahlia Smith travelled to Munich in Germany for treatment.
"We have to do all we can to get her there because Lyme disease is treatable in Germany," Tahlia's mother, Lee Smith, said.
The treatment involved heating her body to a high temperature in an attempt to kill the Lyme disease that was crippling the young Raworth woman.
Kazz Tokek almost lost her life to Lyme disease. The Maitland woman spent six years suffering from a long list of ailments that started in 2006 after a series of tick bites in bush land in Queensland.
The disease wrecked havoc with her immune system and transformed the fit and energetic biologist – who could easily spend three days felling trees, chainsawing and chipping trees – into a frail woman who struggled to get out of bed and could only manage simple computer games and jigsaw puzzles.
Doctors continually dismissed her symptoms as anxiety, twelfth rib syndrome and anemia – or said there was nothing wrong with her – until a Lyme Literate Medical Doctor diagnosed her with the disease and the common co-infection Babesia in 2012.
At that point she was frail and very ill.
After a battery of tests over the next two years, Stig finally received a diagnosis: he was suffering from Lyme disease, a debilitating bacterial infection spread by ticks.
'‘It's well known overseas, but it is not widely recognised in Australia, which is why it took me so long to be diagnosed,’’ he said. ‘‘I had a lot of tests done, but nothing was getting picked up.
‘‘If I had been diagnosed in the early stages, two years ago, maybe I would have knocked it on the head by now.’’
He too travelled to a hospital near Munich for a three-week course of treatment. Ryan has been on the road to recovery since December last year.
"Lyme disease appears to be a hidden epidemic in Australia and we're hearing that there are quite a number of Australians travelling overseas to that one clinic in Germany for treatment. We really need to move things along here and get people the help they need. Lyme disease is obviously a problem because the waiting list in Germany is six months and predominately made up of Aussies.
That figure alone is startling and shows the need here," Mr Stig said.
In late 2015 the Lyme Disease Association of Australia welcomed the announcement of a Senate inquiry into growing evidence of Lyme disease-like illness.
The inquiry was due to report in June 2016...this was put on hold.
The Senate inquiry into the disease that causes a Lyme-like illness was reinstated on September 13, 2016.
Jade Morgan is happy the inquiry into the tick-borne illness has been reopened
Jade's hope for the newly reinstated Senate inquiry into Lyme disease is that the illness is formally recognised in Australia and brings an end to sufferers’ battles to be treated.
Miss Morgan, who has Lyme disease and lives in Salt Ash, fought for four years to have her illness accurately diagnosed.
But life did not get better for the 24 year old after finding out she had the tick-borne disease.
"I find it really hard that the medical professionals can just dismiss Lyme disease," Miss Morgan said.
“Some days I just can't even get out of bed.
“The other thing that really upsets me is that I know there are heaps of other people out there suffering and are getting the same treatment that I am. It hurts.”
Help us get Lyme disease recognised in Australia.
Words by: Belinda-Jane Davis, Donna Sharpe, Sage Swinton, Ellie-Marie Watts, Helen Gregory and Robert Dillon.
Design: Dominica Sanda & Jessica Brown