Lyme disease sufferers join forces across Australia
SHARON Whiteman looked at the taps in her shower but couldn't remember how to use them.
She gave up driving because she would get lost or forget where she was going. The critical care nurse had to admit she could no longer do her job. Ultimately, she couldn't remember the names of friends or family.
Was it early-onset dementia? No, it was Lyme disease.
Although the potentially deadly disease is still not officially recognised in Australia, Sharon, now 59 and the president of the Lyme Disease Association of Australia (LDAA), says over 1500 people have been medically diagnosed as sufferers.
Many who contact the association have first been misdiagnosed as having dementia, Alzheimer's, MS, lupus, rheumatoid arthritis, chronic fatigue syndrome and even autism, so debilitating and wide-ranging are the effects of the tick-borne disease.
South-east Queensland is a hot-spot for Lyme disease, which also has high incidence in New South Wales, Victoria and Western Australia.
A senate inquiry into the disease dissolved with the double dissolution of parliament prior to the election, having brought out only an interim report.
The LDAA is keen to find new political champions of the cause and ensure it is not brushed under the carpet again.
"I was a critical care nurse, so I've always had a drive to help people and I'm stubbornly committed to correcting this injustice," Sharon said. "This shouldn't be happening to Australian people. Their suffering should not be being ignored."
So why is there such reluctance in the medical community to recognise Lyme disease?
Sharon says it's because such a narrow definition is taken of the disease, first discovered in America 34 years ago. The medical fraternity is focussed on a single strain of the Borrelia bacteria which is not found in Australia and denies other strains have the same or similar devastating effects.
Part of the problem, she says is that Australian blood testing for the disease looks for an immune response, but because the disease overwhelms the immune system so quickly, no response is found, and a false negative is recorded. Also only about 30% of Lyme disease patients remember being bitten by a tick.
Sharon herself had a tick bite and bullseye rash typical of the disease but at the time didn't make the connection.
From 2002-2006 she saw 17 doctors who gave her a variety of diagnoses before coming across information in her own research that led her to send her blood overseas to be tested for Lyme disease. The results were positive and she began a vigorous natural treatment which she believes has restored 70-80% of her previous health.
She says a multi-disciplinary approach is needed to treat the disease, which is usually a cocktail of infections, because ticks carry "all sorts of pathogens", and can be different for each sufferer.
But first it must be recognised by the medical profession and by government, so that people can access the same community help as for other diseases such as cancer.
"Lyme disease awareness saves lives," Sharon says simply.
"If someone reads this report and they have an atypical diagnosis for a disease, such as Alzheimer's with associated aches and pains, they should talk to us about being assessed for Lyme disease."
Because the disease is not officially recognised, the association, which is Australia's peak body for sufferers, is completely non-government funded. That means its work is carried out and funded by volunteers, many of whom have or care for someone with Lyme disease.
"We'd love to have seniors volunteer for us," Sharon said. "We need a lot of skill sets, including administration, legal and medical advocacy.
"There are a lot of healthy retired people out there with time on their hands who have a lot of wisdom and experience which we could put to good use," Sharon said.
If you can help, or would like to find out more, go to www.lymedisease.org.au/contact-us.
The ABC's Catalyst aired a program on the subject on July 5, interviewing 20 people, some of whom had suffered from the disease for 30 years. Go to http://www.abc.net.au/catalyst/stories/4494187.htm.