WHEN high-flying corporate IT manager Lisa Gumieniuk fell ill in 2013, she had no idea what was causing her strange symptoms.
The 34-year-old from Drummoyne suffered facial paralysis, blurry vision, stiff joints, insomnia, fevers, memory loss, speech difficulty and ended up losing her career.
She went through 88 doctor appointments before she found a visiting US doctor in July, who correctly diagnosed her debilitating condition: Lyme disease, an infectious disease transmitted to humans by tick bites.
A new Senate inquiry has just been announced into the disease, which has not been officially recognised by Australian authorities.
Ms Gumieniuk now sees her doctor via Skype as he is based in Connecticut, near the town of Lyme where the disease was originally discovered in the mid-1970s.
Late last year, she welcomed the announcement of the official inquiry, which has been prompted by Australian sufferers who say they have been long neglected by local health authorities.
“The quicker people are diagnosed and treated, the less the disease progresses,” she said. “And the cost of the medications and tests are astronomical.”
To be diagnosed, she had to pay $1000 and deliver her blood and stool samples to courier company FedEx’s Alexandria premises early in the morning, to be flown to the US.
Ms Gumienuik, who used to ride her bike 60km a week around the Bays, now can barely walk more than 300m.
“I don’t have a memory of being bitten by a tick, but that is common in sufferers,” she said, adding that she had travelled to Africa in 2013 for her honeymoon, and to Queensland.
Since diagnosis she has been put on a variety of medications, including antibiotics and other expensive medications, as well as changing her entire diet and using natural therapies.
Independent senator John Madigan pushed for the parliamentary inquiry, which is now seeking submissions until March next year.
“What has become clear over time is there are thousands of Australians suffering debilitating symptoms who need answers,” he said.
“Hopefully this inquiry will put the issue on the radar nationally.”
NEED TO KNOW
● The Australian Government does not recognise Lyme disease as endemic
● A Federal Senate Inquiry is seeking submissions until March 2016
● It will “ look at the growing evidence of an emerging tick-borne disease that causes a ‘Lyme-like’ illness for many Australian patients”
● Find out more about Lyme disease in Australia and the inquiry at lymedisease.org.au