Maitland woman Kazz Tokek wants her life back after Lyme disease battle

Kazz Tokek almost lost her life to Lyme disease and now she is ready to grasp her second chance at life.

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.

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

A bacteria called Borrelia causes Lyme disease. 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. 

When Ms Tokek went into remission 18 months ago she finally had a chance to regain her health. She is ready for a part-time job, and desperately needs the money, but nobody will give her a go.

She has applied for more than 250 jobs in the past year and tried everything from administration, customer service and stocking shelves to a waiter, service station operator, and laboratory technician.

“I’ve re-written my cover letter so many times and I’ve tried to show how my skills are transferable,” she said.

“I feel like I’m in the top 10 per cent of employable people and yet I can’t get a job.

“I don’t want anyone else to go through this.”

Ms Tokek, 36, registered with Mai-Wel LabourForce Solutions in January so she could get a job with an employer who would be sympathetic and give her a chance. 

She is an experienced biologist with an impressive resume of conservation work across the nation – and boasts an extensive list of volunteer biodiversity work. 

But the organisation hasn’t been able to find her a job. 

She was sent on work experience at a Beresfield service station where she was asked to clean toilets and stock a drink fridge for five hours.

She was also sent to an interview at a hardware store in Heatherbrae and verbally promised the job, but afterwards she received an email saying she hadn’t been chosen.

Mai-Wel LabourForce Solutions manager Kyllie Tegg would not comment on Ms Tokek’s situation, but did say the unemployment rate and the competition for jobs didn’t help job seekers.

She said staff worked with their clients to make them as employable as possible and connect them with a suitable job. The organisation also has a marketing team that works with employers and encourages them to take on someone with a disability.

“We continue to get people jobs every day, at the end of the day it is tough going,” she said. 

Ms Tokek said she would continue to look for work independently, although she admitted the constant rejection was disheartening.

“I get an average of two rejection emails a day,” she said.

“I want to work, I am ready for a part-time job and there’s lots of things I could do – I just need someone to give me a chance.”

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.

“I have always been passionate about critters – learning about them, caring for them,” she said.

She isn’t afraid of going back into the bush and she still respects ticks and their place in the world, even though those critters nearly killed her.

“I want to go back, I feel most at home in the bush.”

Ms Tokek was working in bush land management near Brisbane in December 2006 when a paralysis tick bit her on the head. The side of her head, her neck and part of her forehead became swollen and she couldn’t get out of bed for three days.

Earlier that year she had been bitten by a scrub tick and had felt sick when she went to the gym later that day. When she went to a pharmacy for advice she was told her reaction was similar to someone who was allergic to bees, so she went home.

“I didn’t think much of this reaction and did not seek medical attention,” she said.

“The doctor would be wasting their time for an allergy.”

In the next few months she started to feel sore and was aching when she got out of bed. Then she started to become sick frequently, especially when she was doing physically demanding work, and would often lose her voice.

It took two more tick bites – one on her left shoulder near Gloucester in 2010 and another on her right leg in 2012 – before she found out she had Lyme disease.

An article about Lyme Disease in an ecology newsletter finally gave her some answers and soon after she was diagnosed with the illness.

"Nothing prepares you for that something that is actually life-changing," she said.

"I'm so lucky to be alive. I'd never heard of Lyme Disease until 2012 and if i had known about it I would have taken precautions out in the bush."

Ms Tokek said the treatment was worse than the illness. She was given three types of oral antibiotics and then 18 months of intravenous antibiotics five days a week.

It was difficult to secure the medication necessary to treat the illness because the disease is not recognised in Australia.

The treatment took a toll on her body and she ended up in hospital several times.

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

“Several people have praised me for my strength and courage over the past five or more years.

“However, there have been many, many occasions where I have felt I was too weak and too beaten down to continue to fight.”

Ms Tokek said she was incredibly grateful for the doctor who saved her life – and for her boyfriend Jake who had been an unwavering support.

“I wouldn’t have had the strength to keep going with my fighting and recovery this year if it wasn’t for him,” she said.

“I have had very little support from anyone else … I have lost nearly all of my mates and have no sense of purpose.

“I want to try to make an enjoyable life for myself.”

This story Lyme disease survivor desperate for work after health battle | Photos first appeared on The Maitland Mercury.

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