Coast woman finds hope after Lyme disease battle
AFTER a long battle with a disease not recognised in Australia by medical experts, a Sunshine Coast woman wants to give other sufferers hope.
Buderim resident Trudi Bareham said when she was seriously ill with Lyme disease, the only thing she wanted to do was read or hear stories from people that had recovered from the tick-borne disease.
"Everyone's journey with Lyme is different but we all want to know that there's a possibility of survival," Trudi said.
Trudi was initially diagnosed with rheumatoid arthritis in 2009 and spent the next six years with deteriorating health until she was diagnosed with Lyme disease in 2015.
"I had a huge symptom list, and very often it just felt like insects crawling under my skin," Trudi said.
Once she finally discovered what was wrong, she felt relieved that she could begin treatment.
That was until she uncovered the difficulties that people with Lyme disease face in Australia.
"Generally, the Australian Government, the medical profession totally denies its existence here," Trudi said.
"Doctors aren't allowed to treat Lyme. There's a very big political situation around it.
"Most patients end up sending their blood overseas to internationally accredited laboratories for testing and diagnosis.
"Even when the results come back positive, they are still not accepted in Australia.
"The problem is you are incredibly sick and you can't access any medical help."
Trudi said the disease could become very isolating with a long recovery process.
"I had zero quality of life and had pain 24/7," she said.
"I looked grey and my muscles wasted.
"People in my neighbourhood stopped talking to me and I realised when I started recovering, that people just didn't know what to say to me because they thought I was dying."
After going through three very challenging years, Trudi said she was feeling much better.
"I took a very long time before I saw any improvements but I'm feeling pretty good now."
Trudi said there were so many discrepancies with the way people with different illnesses were treated.
"The fact is, patients are going to doctors with diagnosis, that they probably got overseas because they can't get it here, they are clearly very sick, and yet everyone is saying Lyme doesn't exist in Australia.
"It's so frustrating."
Trudi said more research was needed and more education of doctors as it was a really complicated illness to treat.
"Doctors are afraid to treat Lyme disease for a fear of retribution as they are having their licences restricted or taken away," she said.
Trudi said the Lyme Disease Association of Australia was doing incredible work in raising awareness.
"People, including Lyme disease specialists around the world, are watching Australia," she said.
"They are paying attention to what's happening here and honestly, they are absolutely beyond amazed at how backward the treatment of Lyme patients is here."
Various celebrities including Justin Bieber, Yolanda Hadid, Bella Hadid and Ben Stiller have all gone public about their battle with Lyme disease.
"Any publicity just raises awareness for people that Lyme disease is a very real illness despite what a lot of the world says," Trudi said.
"More research is needed, particularly in the testing and treatment, because it's not just as simple as taking an antibiotic."
Trudi will be featured in the Stories of HOPE Australia 'Where are they now' talk on Tuesday, January 28 at the Sands Tavern in Maroochydore.
"After doing my first talk (at Stories of HOPE) I felt that they were a community of people that just understood what it was like to suffer," Trudi said.
"For anyone who is going through a very difficult time, there can be a way out.
"Lyme disease teaches you about strength and resilience and how much you're actually capable of.
"Never give up, there's other people out there who understand what you're going through."
According to the Australian Government Department of Health, the Government is aware there are many Australians who are experiencing chronic debilitating symptoms which many associate with a tick bite.
The total number of patients with Classic Lyme disease is not documented by the Department of Health, but advocacy group Lyme Disease Association of Australia estimates more than 2000 people have the disease across the country.
Classic Lyme disease, Borrelia burgdorferi, has been identified in Australian patients, bitten by a carrying tick overseas.
However, the Department of Health said the organism was yet to be identified in Australian ticks and there was no evidence an infection could be caused by an Australian tick bite.