TAHLIA Smith has vowed to campaign for recognition for sufferers of controversial Lyme disease, as she makes a remarkable recovery following life-saving treatment in Europe.
Ms Smith, 21, from Raworth travelled to Germany, Switzerland and Serbia late last year for the intensive treatment, which has her feeling “amazed” at being able to walk for the first time since April, and stopped debilitating seizures that left her unaware of her surroundings for hours at a time.
“It’s very frustrating and sad that people have to literally pick up their bags and fight for their life in another country, where they don’t speak the language and don’t know if they’re doing the right thing or not,” Ms Smith said.
“This journey has been annoying and hard, but what got me through was the hope that I’d get better and the fact that I was not fighting for myself, I was fighting for others too.
“This is a disease that does exist and we should not be treated like aliens that don’t belong on earth, like kids who don’t want to go to school. We’ve done nothing wrong, we’re just asking for help.
“The medical system needs to treat people with respect, care and kindness. It’s ridiculous the prices are paying for lots and lots of treatment and it’s sad that people are going broke.”
The Newcastle Herald reported in April last year how the performing arts student was not able to feel anywhere below her hips and was living with a swollen spinal cord, leg tremors, nausea, headaches and body and joint pain.
Doctors suggested she had Crohn’s disease, ulcerative colitis, irritable bowel syndrome, anorexia and bulimia and removed her tonsils and appendix before she received a diagnosis of Lyme disease, an illness transmitted following the bite of a tick infected with the Borrelia bacterium.
“Some people have been bullied and victimised by doctors and I’m one of them,” she said.
“It’s sad that doctors say things that make you question yourself and you start to wonder whether you have what they’re saying you have or whether its all in your head.
“I think the doctors don’t want to believe due to lack of education. They were not taught about this disease because they were told it does not exist.”
Ms Smith also suffered violent seizures every three hours that would last for about eight minutes.
By the end of the year, the seizures would last the whole day and she was unable to open her eyes until about 6pm.
“It was very hard,” she said. “There were times when I wished it would all hurry up and end.
“But although I was fighting for my life I also had to be grateful, I had my friends, my family, a roof over my head, blankets and food.”
Ms Smith soon became the Hunter face of the disease and was the grateful recipient of thousands of dollars of donations to help her travel to Europe for treatment.
She flew to Germany on November 6 and underwent blood filtration at the INUS Medical Centre in Cham and hypothermia treatment to kill the bacterium in St. George Hospital in Bad Aibling.
“They said I was the worst patient they’ve ever had, I’d gone so long without help and treatment that I was at the stage that no-one should really get to,” she said.
Ms Smith returned to Cham for more blood filtration and went to Switzerland for stem cell treatment.
When she was found to be bleeding internally she was rushed to Serbia for treatment and blood transfusions.
Ms Smith landed in Australia on January 1 and soon lodged a submission to the Senate Inquiry into Lyme-like illness in Australia, which will report on June 20.
“I wrote my story and ended it with ‘It’s 2016, it’s time to tick the box’,” she said.
Ms Smith still travels to Sydney twice a week for treatment for her two co-infections, babesia and bartonella, but is now “whizzing around” with the help of a walking frame.
“I was hoping it [walking] would happen, but I didn’t want to get my hopes up too high because at one stage we did not think anything was going to happen,” she said.
“I’m becoming a lot more independent than before. I can shower myself, dress myself, do my own hair, little things that people would take for granted.
“I’m a big believer that things happen for a reason and while I can’t work out the reason now, it’s made me a much stronger person.
“I hope my story not only makes more people aware that Lyme disease does exist, but gives hope to other people that have Lyme disease that there is a light at the end of the tunnel.”