Patients and doctors who believe there is a hidden Lyme disease epidemic in Australia have become a formidable political force The medical establishment rarely faces the court of public opinion, and wars over medical truths are largely fought in the pages of esteemed journals. But in the case of Lyme disease in Australia, the dispute […]
Patients and doctors who believe there is a hidden Lyme disease epidemic in Australia have become a formidable political force
The medical establishment rarely faces the court of public opinion, and wars over medical truths are largely fought in the pages of esteemed journals. But in the case of Lyme disease in Australia, the dispute between patient advocates and medical authorities has become increasingly public and sour.
There is “no convincing evidence” that Lyme disease can be acquired locally from Australian ticks, a recent article in the MJA states.1 Despite this lack of evidence, thousands of patients with debilitating chronic illness believe they have the disease.
The unfolding drama of the Senate inquiry into Lyme-like illness has further pushed Lyme disease into the limelight, with the latest clash occurring at a public hearing in Sydney in November.
Dr Gary Lum, clinical microbiologist and senior medical officer in the Federal Department of Health, predicts the two camps will remain divided. “Noting (that) verifiable, validated evidence is yet to be found for many aspects of this problem, there will continue to be disagreement,” he told Rheumatology Republic.
Lyme disease was first recorded in the US in the late 1970s and has since appeared across Europe, Japan and China. The illness is caused by four main species in the bacterial genus Borrelia, namely Borrelia burgdorferi, Borrelia mayonii, Borrelia afzelii and Borrelia garinii.
It is transmitted to humans through the bite of a tick.
But no survey of Australian ticks has ever found they carry these bacteria. Moreover, Borrelia has not been cultured from any individuals who claim to have acquired the disease in Australia.
“Despite a number of reports of putative cases and a discussion across several decades, locally acquired classic Lyme disease has not been identified in Australia,” the authors of the recent MJA article (Dr Lum, and microbiologists Professor Peter Collignon and Dr Jennifer Robson) write.
But Lyme disease advocates contest these facts. “We have [locally acquired] Lyme disease in Australia,” insists Dr Hugh Derham, a GP from Western Australia. “It absolutely exists and it’s common.”
Dr Derham is one of several “Lyme-literate” doctors who have made submissions to the Senate inquiry defending their controversial testing, diagnoses and treatment plans. He claims to have personally diagnosed over 900 patients with Lyme disease. “The only trouble is that nobody will believe it,” he says.
Bolstered by a handful of sympathetic GPs and positive test results from unaccredited laboratories, people who believe there is a hidden Lyme disease epidemic have become a formidable political force in Australia.
Online information sharing and social media has brought thousands of these people together to form lobby groups in most states. The most prominent organisations include the Karl McManus Foundation and the Lyme Disease Association of Australia.
Over the past decade, Lyme disease advocates have become more vocal. It was only a matter of time before the government had to respond. In 2013, the government launched a Clinical Advisory Committee and commissioned a scoping study on Lyme disease.
In 2015, this evolved into a full-blown Senate inquiry titled: “Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients.” Before releasing its interim report in May 2016, the inquiry received more than 1100 submissions and hosted multiple public hearings across the country.
The Senate Committee interim report tells a story of patients grappling with chronic symptoms, frustrated by medical practitioners
