It’s the medical conspiracy of our times – a disease that the Australian Government refuses to recognize, nor sanction treatment on the public system. Doctors treating patients with Lyme Disease can expose themselves to de-registration, it’s that serious.
Yet this disease which starts with a tick bite, is so devastating that sufferers have taken their own lives. They’ve spent months if not years in bed. It has robbed children of precious growing up years and forced adult sufferers to spend their life savings or remortgage their homes to head overseas in the hope of getting the cure Australia refuses to provide.
The symptoms include chronic fatigue, extreme pain especially in joints, and brain fog. When worse, patients report neurological symptoms like sight loss, paralysis and cardiac issues.
Current world’s best practice in treatment options includes IV or oral antibiotics given early; some do well with herbal antimicrobials. Another innovative treatment in the news just now (see box) is heating the body to 42 degrees Celsius to kill the bacteria, or hyperbaric chambers where lowered air pressures boosts the immune system. All are denied payment on the public health system.
“One day the Government will come to its senses,” say Marie Huttley-Jackson, President of the Lyme Disease Association of Australia (LDAA). Her five year-old daughter got a tick bite while visiting her grandmother on the Northern Beaches. She’s only just coming through it six years later.
Refused treatment by her GP, Marie found cold laser helped rid her daughter of the tick-born bacteria. “I would take her into the appointment in a wheelchair clutching a sick bag,” says Marie. “She would walk out of their afterwards feeling fantastic. It was miraculous. Today aged 11 she is symptom-free.”
The Government only recognises and pays for treatment of Lyme Disease when it’s acquired overseas. “They’re denying that a certain strain of Borellia, the bacteria that causes Lyme, even exists in this country. They say there’s just not enough evidence. A Senate enquiry reported in late 2017 that until they see a particular strain of Borellia here, they won’t accept Lyme exists on our shoes.”
Yet every year hundreds of cases are reported to the LDAA and the Australian Chronic Infectious and Inflammatory Diseases Society whose doctors have treated over 4,000 cases to date. Meanwhile in the US, there are 300,000 new cases of Lyme a year, costing the US economy $3 billion.
“It’s not a notifiable disease here so there’s nobody officially reporting the numbers,” say Marie.“If we knew how many it would help us advocate for research. We’ve been asking for years to have Lyme registered as a notifiable disease but we’ve been knocked back.
“The Australian patient cohort and success of the treating doctors (there are a few who risk deregistration to treat sufferers) should be sufficient for the Government to be proactive in preventing the disease through early intervention and awareness.The patients are the evidence they need. The Government’s just not listening to patient groups nor treating doctors.
“There’s plenty of evidence that people who are sick from tick borne illness, recover after world’s best practice treatment. The government could have funded urgent research long ago which might have helped to stem this burgeoning epidemic.”
The only glimmer of hope is the Federal Health Minister Greg Hunt recently announcing a forum at which all interested parties can decide what action needs to be taken.
Epping woman’s Lyme Disease story
Since Epping mum Pam Connor was bitten by a tick in 2013, she developed Lyme Disease and hasn’t been able to work full-time since. She had trouble walking, was beset with brain fog, couldn’t sleep, developed a raft of food allergies and had constant pains in joints and muscles. After doctors came up with a wide range of diagnos, her internet research took her to a German clinic near Munich. There, she underwent hypothermia treatment, where the body’s temperature is raised to 42C for two hours, under close scrutiny by doctors. It boosts the immune system and kills the culprit Borellia strain. The treatment which cost $20,000 worked instantly, and today she’s 90% better.
“I feel like I lost five years of my life. What would really help is if the government made all the treatments claimable and available. Instead we have to fund our own recovery which is incredibly complex and expensive, often going overseas for it.”