My crippling disease ‘doesn’t exist’
MADISON Rapa will never forget the day a doctor told the then 24-year-old her crippling pain and debilitating sickness was due to "ageing".
The young Melbourne woman had returned from a dream holiday in the United States when she fell ill with extreme fatigue and muscle aches, migraines and nausea.
Madison had stomach pain so excruciating she couldn't even eat an almond without "rolling on the ground" in agony.
She lost her voice, had problems with her heart and lungs, suffered from memory loss and drenching hot sweats and fevers.
And in the 2 ½ years since getting sick, the formerly active businesswoman has barely left her house, apart from attending medical appointments.
But despite seeing 47 doctors, most have been unable - or unwilling - to help her.
That's because Miss Rapa, now 26, has Lyme disease, a condition so controversial it's barely recognised in Australia.
According to NSW Health, Lyme disease is a tick-borne infection "caused by bacteria in the Borrelia burgdorferi sensu lato group".
The condition is so contentious in the medical realm because "although locally-acquired Lyme disease cannot be ruled out, there is little evidence that it occurs in Australia".
In other words, medical authorities don't accept that people can contract the disease here.
Another issue is that while people like Miss Rapa have experienced long-lasting, incapacitating symptoms, the Federal Government's Department of Health states "the concept of chronic Lyme disease is disputed and not accepted by most conventional medical practitioners, not only in Australia but around the world".
Instead, people with Lyme disease symptoms are simply treated with a course of antibiotics such as doxycycline, even if symptoms persist for months or years.
But Miss Rapa said even though her illness was contracted in North America, she'd still been dismissed by most doctors. A friend set-up a crowd-funding page for Miss Rapa who has twice travelled to Malaysia for treatment not available here.
She has also recently found a good doctor in Sydney and is finally responding to treatment - but she said she had "easily" spent more than $100,000 throughout her ordeal.
At the moment she's spending $1000 per week on appointments, medication and travel.
"I have to travel interstate to see the doctor and none of it is covered by Medicare. I've been misdiagnosed so many times I've spent thousands on treatment for things I didn't have," she said.
Miss Rapa said most Lyme disease patients she knew were also shelling out a fortune on treatments both in Australia and overseas.
It's an experience shared by Lyme disease Association of Australia president Marie Huttley-Jackson.
When she took her five-year-old daughter to the casualty department after she experienced paralysis after contracting Lyme disease, she was sent home and judged as a "bad mother" who was encouraging her child to "make up" symptoms.
She said it was a "travesty" that Australians were being ignored, financially crippled and forced to seek treatment overseas.
"It's absurd that people have to go overseas and spend their life savings or superannuation in order to regain their health," Ms Huttley-Jackson said.
She said the medicine prescribed by a private doctor to treat her daughter's illness was not on the Pharmaceutical Benefits Scheme, which meant it cost a staggering $1100 per bottle.
And she claimed the few Australian doctors who did treat patients for Lyme disease were often investigated by the Australian Health Practitioner Regulation Agency, which then put "offending" doctors on restrictions or threatened them with deregistration.
The claim was backed up by independent Victorian senator John Madigan, who launched a Senate inquiry into 'Lyme-like illnesses' in Australia in 2015.
"In relation to Lyme disease I am seeing a mafia-like approach to doctors at the cutting edge who are helping patients in a tangible way," he told the Herald Sun at the time.
However, the Department of Health's response to the inquiry was that there was "insufficient evidence" the illness was largely tick-borne.
Ms Huttley-Jackson said the government had ignored evidence of Lyme-like illness for over 20 years.
Today, the disease is slowly getting more recognition, thanks largely to a slew of big-name celebrities who have shared their experiences with the condition, including Avril Lavigne, Shania Twain, Alec Baldwin and Yolanda Hadid.
But for sufferers like Miss Rapa, more needs to be done - fast.
"The message I'd like to get across is for the Australian government to create more awareness - if they don't want to put money into treatment to help people in my position, then at least don't punish the few people who are," she said.
"I also wish they'd educate doctors on how to diagnose and be aware of signs of the illness so at least we can get some answers and get treatment elsewhere before it's too late.
"It was 2.5 years and 47 doctors for me but other people I have met had been sick for over 15 years before getting diagnosed."
A NSW Health spokesman said cases of Lyme disease in Australia are "extremely rare and have only been identified in travellers returning from countries in the northern hemisphere where the disease is prevalent".
"A local form of classical Lyme disease has not been identified to date.
"Some people may report chronic debilitating symptoms following a tick bite but without
specialist expertise and screening, it can be difficult to ascertain if those symptoms are from
the tick bite or coincidental."