There’s nothing like feeling alone.
Kazz Tokek knows this feeling too well.
She is one of the lyme disease sufferers from the Hunter region who had their world turned upside down after a tick bite.
She had trouble finding a doctor who would treat her symptoms and was forced to sell her home to pay for treatment.
She’s spent more than $450,000 and she doesn’t want anyone to go through the same emotional, mental, physical and financial pain.
But without a severe shake up of the approach to lyme disease in Australia more people are set to experience the struggle of battling with an illness that is not recognised. She has urged people to stand up and help create change.
Tahlia Smith, the Raworth woman who traveled overseas for treatment, has also backed the call for change.
She said the federal government must recognise that tick-borne illnesses exist.
“No-one should have to travel overseas to access treatment for this, it should be available here,” she said.
Tick bite victims plead for support
Imagine living with lyme disease, just for a moment.
“You’ve got the worst flu you’ve ever had on top of the worst hangover you’ve ever had,” Jennifer Sherer says.
“You go to the hospital for help and they tell you to go away.
“When you’re that sick you don’t have an ability to put your case forward.”
The need to help people with tick-born illnesses recover has prompted Lyme Disease Association of Australia vice president Jennifer Sherer to renew calls for change.
She knows the heartbreaking reality of living with the disease. She had her own battle with it and she says she’ll never be the same again.
Ms Sherer said the Senate inquiry into lyme disease had put forward some life-changing recommendations, but it’s not known whether they will be implemented or how long it will take to change the way patients are treated.
The inquiry found the federal government should urgently increase funding for research into tick pathogens and find out if newly-identified pathogens can make people sick.
It also called for research into the extent of the illness in Australia and how many Australians had contracted it while overseas.
“The studies and research is great but people need help today,” Ms Sherer said.
“People are getting bitten by ticks and something in the ticks is making them sick.”
Ms Sherer welcomed the recommendation that the federal, state and territory governments research appropriate treatments for tick-borne illnesses, develop treatment guidelines and provide a consistent approach to the disease.
If the recommendations are embraced a safe treatment protocol for patients would be developed and a summit would be held to work out how to meet patient and medical needs.
The association is inundated with requests for help each day as more people are diagnosed and realise how hard it is to find treatment.
“We are the main support for patients going through this,” she said.
“A lot of them go to a doctor and they’re told there’s nothing wrong with them or they are diagnosed with something else.
“It’s up to them to get tested for it, and if it comes back positive, they have to find someone who will treat them, it’s very frustrating for them.
“This could happen to anyone, it could be your brother, sister, father, mother, your friend, someone you know.”