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 had the world at her feet as a promising performing arts student. The Raworth woman had been accepted to study a diploma in musical theatre at Sydney's Brent Street and at Film & Television Studio International in Melbourne. 

Tahlia Smith before her illness.

Instead, she lived with a swollen spinal cord, constant leg tremors, chronic nausea, headaches and body and joint pain. She was sensitive to noise and needed ice packs to combat constant fevers. But most terrifying were the seizures that arrived every three hours and could last up to eight minutes. Her eyes rolled back in her head, her arms, hands and fingers stiffened and she sometimes started accidentally choking herself.

She lived with Lyme disease for years before receiving treatment.

Tahlia Smith's health deteriorated quickly before she was diagnosed with Lyme disease.

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.

Tahlia Smith after treatment in Germany.

After intensive treatment in Germany,  Switzerland and Serbia in late 2015, Tahlia landed back in Australia on January 1.

 Soon after, she was able to walk for the first time since April 2015, and the  debilitating seizures that left her unaware of her ­surroundings for hours at a time stopped. 

Tahlia Smith has regained her independence. "I wanted to give up, but if you stick it out and fight you will find the light at the end of the tunnel and you'll never look back," she said. Picture: Max Mason-Hubers

Soon after Tahlia landed in Australia she lodged a submission to the Senate Inquiry into Lyme-like illness . 

 "I wrote my story and ended it with 'It's 2016, it's time to tick the box’," she said.

Lyme disease sufferer, Raworth woman Tahlia Smith, is determined to to have the disease recognised in Australia.

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. 

After suffering from Lyme disease, Kazz Tokek struggled to find work. Picture: Marina Neil

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.

"The treatment phase was essentially a fight for survival – I was so busy trying to simply survive," she said.

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.

Ms Tokek was working in bush land management near Brisbane in December 2006 when a paralysis tick bit her on the head

A chance encounter with a Sydney chronic illness specialist saved her life through three years of intensive treatment. But it was not cheap. She was too sick to work for four years and had to sell her home, most of her belongings and use all of her savings to try to save her life.  

She spent more than $450,000 on a disease that the federal government doesn't believe exists in Australia.

Ms Tokek dreams of returning to the conservation industry and helping to preserve fauna. It's a mission that’s been with her since childhood.

Knights' five-eight Ryan Stig appeared to have the rugby league world at his hot-stepping feet in 2011 when he played 13 games for Newcastle, including the playoff loss to Melbourne, and was rewarded with a two-year contract.

 But early in the pre-season to prepare for his second campaign, the former Australian Schoolboys playmaker was sidelined with a blood clot behind his eye and then mysterious chronic fatigue-type symptoms.

Ryan Stig has called for Australia's medical profession and federal government to stop arguing and start rolling out treatment trials for Lyme disease. Picture: Darren Pateman

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.

Former Morpeth junior Ryan Stig in action for the Newcastle Knights in the National Rugby League.

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