Lonely reality of living with Lyme disease in Australia
BEING diagnosed with Lyme disease in Australia can be a lonely process according to Grace De Bruin, who has had the disease since 2014.
"I was bushwalking with my boyfriend at the time and I got bitten by so many ticks, I think we stopped counting at 150," the Maclean resident said.
"I got sick very, very quickly, for some people it can be very slow over many years or months.
"For two to three weeks, I couldn't wake up for more than an hour a day, I couldn't move, I couldn't eat anything, (I had) tinnitus."
Lyme disease is a tick-born infection caused by bacteria Borrelia burgdorferi.
When Ms De Bruin went to the doctor, she was was told Lyme disease didn't exist in Australia.
But she was lucky enough to find a doctor in Byron Bay who sent her blood to America to have it tested and the results came back positive.
"I have been on ridiculously high doses of antibiotics for a few years, but I started getting heart flutters and palpitations, so I decided to go off antibiotics because I figured it was making me worse and more sick than the Lyme was at the time," Ms De Bruin said.
"I've been on naturopathic treatments and herbal remedies but my body tends to reject them straight away."
Ms De Bruin said having Lyme disease had been more lonely than scary.
"My parents have been very supportive," she said. "But I think because it's not accepted, I think sometimes I haven't quite accepted it either.
"Some days I think I'm crazy and I'm faking it because other people say I'm faking it. Because some days I can actually get up and do things all right, some days you do feel like you're faking it even though I have the blood tests results saying I have it."
Ms De Bruin is not the only Clarence Valley resident who has been diagnosed with Lyme disease. Yamba resident Di Ellis first started presenting symptoms nearly eight years ago.
"Diagnosis was a nightmare," she said.
"I got some tick bites eight years ago... and I went to the doctor the next day because a friend of mine who is a nurse told me about Lyme disease.
"I went to do doctor and got a course of antibiotics and had a test, but it came back negative."
Six months after her first visit to the doctor, Ms Ellis said the disease was taking over her body.
"I was dying, basically. I was severely underweight. I was 53kg and I'm almost 6ft tall," she said.
It was another four years of searching for help and doctors telling her she didn't have Lyme disease before she got a positive diagnosis.
Ms Ellis got in though with a Lyme disease specialist in America, who did a clinical diagnosis.
"I filled out a 20 page questionnaire on my whole history and the symptoms," she said.
The specialist began to treat Ms Ellis from America and it was then she began to see an improvement.
"I had a fairly dramatic improvement with that treatment, even though I was still suffering a fair bit with every day," she said.
"Overtime I just keep trying more and more things, and I keep improving."
Last year, Ms Ellis was officially diagnosed with Lyme disease through DNA testing.
- May is the World Lyme Disease Awareness Month. Check out Lyme Disease Association of Australia for more information about Lyme disease and its treatment in Australia.