LYME disease is a debilitating tick-borne disease that causes a list of possible symptoms longer than an A4 page, including everything from extreme fatigue and swollen glands to slurred speech and impaired movement.
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There may also be fever, headaches, and joint pains. Fewer than 50 per cent of those bitten get a distinctive bulls-eye rash. It is often mistaken for motor neurone disease, Parkinson’s or multiple sclerosis.
In later stages of Lyme disease the infection spreads through the bloodstream and can cause infection in the brain and membranes surrounding the brain (meningoencephalitis) and infection in or around the heart (endocarditis, myocarditis or pericarditis).
The disease can also cause inflammation of joints and cause joint pain and long-term neurological involvement.
The official position from NSW Health is that there is “little evidence” that locally-acquired Lyme disease exists in Australia.
But a growing list of Australians begs to differ.
One of them is Jan Bourne of Vincentia. She doesn’t want to use her real name because claiming to have caught a disease that officially doesn’t exist here could have her labeled a crackpot.
“I think I did have Lyme disease, and I think the government denies it because it would open up a can of worms,” said Mrs Bourne.
“There are ticks all down the east coast carrying all these bacterium and they can make a well person very sick, and children very, very sick.”
Mrs Bourne’s story began in August 2011 while she was playing a pleasant game of golf on a local course, when she felt an irritation on the back of her neck. A friend found a tick there and kindly pulled it out with her fingernails.
“It was the worst thing she could have done,” said Mrs Bourne.
“There was a little bit still left in there, and in the end I had to have it removed surgically.”
At the time, she thought no more about the bite until a day or two later when severely swollen glands and an inflammation in her neck sent her to the doctor, who prescribed amoxicillin and sent her on her way.
Not long after, she and her husband left on a six-week overseas trip, where her condition noticeably worsened until the day of her return, when she was rendered practically immobile and in great pain.
She was initially diagnosed as having the mysterious polymyalgia rheumatica and prescribed steroids, a diagnosis shortly afterwards discarded by a specialist.
“The rheumatologist thought I had rheumatoid arthritis brought on by the tick bite,” said Mrs Bourne, who was then prescribed a range of more serious antibiotics and the chemotherapy drug methotrextate.
Since then Mrs Bourne has had a partially collapsed lung, an inflammation of the lining of the lung, pneumonia and pleurisy.
Her current diagnosis is back to polymyalgia rheumatica, and her doctors consider that any bacteria contracted from the tick has been cleared by her constant and heavy doses of antibiotics.
Despite scepticism in the general medical community, Mrs Bourne believes that Lyme disease – transmitted following the bite of a tick that was infected with the borrelia bacterium – kicked off her spiralling list of symptoms.
“It’s amazing that such a little thing can be so deadly,” she said.
Her experience is echoed all up and down the east coast of Australia. A forum run by the Lyme Disease Association of Australia in Jervis Bay recently attracted 60 people, many of whom had experienced unexplained illness after a tick bite.
For more information go to lymedisease.org.au.