ACT News

Canberra family ticked off about lack of recognition of Lyme disease

Genavieve Jackson, 8 was diagnosed with Lyme Disease last year.
Genavieve Jackson, 8 was diagnosed with Lyme Disease last year. Photo: Jay Cronan

It took 20 months and 23 doctors before Genavieve Jackson was diagnosed with a disease the government denies exists in Australia.

The eight-year-old Lyons girl was bitten by a tick on Sydney's northern beaches more than two years ago.

After developing flu-like symptoms, she started experiencing pain in her feet, an inability to move, lack of reflex, trouble breathing, random blindness and black-and-white vision.

Her face went numb for a year. "And we're pretty sure about that, because the neurologist stuck a needle in her face," Genavieve's mother, Marie Huttley-Jackson, said. "We had all sorts of grim things happen."

Last year, Mrs Huttley-Jackson found an "open-minded" doctor who diagnosed Genavieve with Lyme disease, or what's described as "Lyme-like illness" in Australia. It's difficult to diagnose and treat, because it presents with more than 100 symptoms that differ among people.

"It's a poorly understood disease and it catches you out quite a bit," Mrs Huttley-Jackson said.

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The disease's unpredictable nature meant Mrs Huttley-Jackson stopped work as a public servant, as Genavieve misses an average of two days of school a week; which days are impossible to predict.

Lyme disease is a tick-borne infection caused by the Borrelia​ bacteria.

The problem is that while the disease appears in Australians who have not travelled overseas to tick-prone areas, the government says no researchers have formally identified the bacteria or another "causative agent" in Australian ticks.

And the science of testing in Australia is problematic; blood samples sent to different laboratories will come back negative from one and positive from another, making diagnosis difficult.

Treatments for the disease tend to target the symptoms, and vary from aggressive, year-long courses of antibiotics to antimicrobials and massage for the pain.

Genavieve has had success with treatments such as low-level medical lasers, arriving "to treatment in the wheelchair with the vomit bag on numerous occasions and she walks out of there happy".

She has also had some luck with a recently discovered anti-parasite drug Artemisinin. Artemisinin's discoverer, Tu Youyou, won the Nobel Prize for Medicine this year for her investigations into herbal medicine and rendering a "remarkably effective" drug for treating malaria.

In Australia, there is progress towards recognition.

Led by independent Victorian senator John Madigan, the upper house has agreed to hold an inquiry into Lyme-like illness, to which Genavieve and Mrs Huttley-Jackson will tell their story in 2016.

"What has become clear over that time is there are thousands of Australians suffering debilitating symptoms who need answers," Senator Madigan said.

"Hopefully, this inquiry will put the issue on the national radar and bring us a step closer to providing those answers."

Just how many people suffer from the disease in Australia is unclear; the government does not collect information on the number of Lyme disease cases.

The Lyme Disease Association of Australia, with which Mrs Huttley-Jackson volunteers, collects its own data, finding nearly 1500 individuals with a medically confirmed diagnosis.

Although there is no telling the course of the disease, Genavieve and her mum are hopeful. This year was better than the last, which was better than the one before that.

"We measure macro things like how many days a week does she miss school, how many nights does she have pain, because there's no really sure way of predicting what will happen," Mrs Huttley-Jackson said.

"But Genavieve's got a good spirit, and we're confident that we can help her."