WHEN Tahlia Smith boarded her flight to Europe for treatment for controversial Lyme disease, she could not walk or talk and had been suffering seizures for more than 23 hours a day.
“November 6 last year was a good day, there was hope in the air I was going over to get better,” Ms Smith said. “But it was also hard for my family – they did not know if they were going to see me again because I was so bad.”
Ms Smith, 22, underwent blood filtration, hypothermia treatment and stem cell treatment. More than a year later she still travels from Raworth to Sydney for immune-boosting treatment once a week and has fluctuating energy levels. But her life is returning to normal and she is looking for a job. “I would not take it [the treatment overseas] back for the world,” she said. “But it was really sad I had to go to another country to get my life back on track.”
In a report published this week, the Senate inquiry into tick-borne diseases laid the foundation for patients – which it said had been dismissed by doctors; shuttled between misdiagnoses; told they were crazy; and turned away from hospital after mentioning Lyme – to receive treatment on home soil. “Any suggestion that doctors should only treat patients if and when they have pinpointed the cause of illness is troubling,” the report said. “Emerging diseases require safe and responsible treatment even when the science is in progress. Patients cannot be asked to wait.”
It acknowledged the medical profession was torn between the risk of misdiagnosis in the absence of evidence and the risk of inaction and over-reliance on pathology tests.
It made 12 recommendations, including that medical authorities establish a clinical trial to determine a safe treatment protocol and the government fund research into medically-appropriate treatment to develop clinical treatment guidelines.
The report acknowledged the prevailing view that classical Lyme disease is caused by a number of closely related species of Borrelia bacteria, which Australian medical authorities believe cannot be contracted in this country.
But other experts believe Borrelia is present in some form in Australian ticks – and that other bacteria, viruses and pathogens also carried by ticks may cause an illness similar to Lyme disease.
The report recommended the government increase funding for research into tick-borne pathogens “as a matter of urgency”.
Lyme Disease Association of Australia's Sharon Whiteman said the report was a “huge step forward” and thanked the three Senators who tabled it and “committed to championing this issue”. “There’s a lot of validation in there,” she said. “Sick Australians deserve treatment for illness.”