Lyme – the disease that isn’t

Jenny Barlass

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.”

5 COMMENTS

  1. Such profound ignorance tamerlane1976Bob.
    Best you should
    FIRST become comprehensively informed about this complex multi-systemic, multi-infection biotoxin illness.
    BEFORE you so freely share your blatant ignorance and also widely defame others.
    The medical profession is blocked, without first asking the right questions and
    NOT seeking appropriate testing to be able to ascertain a
    CORRECT patient diagnosis.
    Your profound ignorance is currently predominantly shared by the non Lyme-literate Australian medical profession, whose training is dangerously outdated,
    resulting in medical negligence causing harm to those managing living with this disabling disease.
    A disease which in many cases, although not all, IS ABLE TO BE VERIFIED with appropriate medical testing.

  2. Tamerlane1976Bob Why do you feel it is necessary to put down anyone who happens to think it is in Australia? Just because someone in authority has not yet been able to find Borrelia in Australian ticks, it does NOT mean it is not here. What about this paper? https://www.ncbi.nlm.nih.gov/pubmed/1875848 and this paper https://ogma.newcastle.edu.au/vital/access/manager/Repository/uon:30560 and this video https://www.youtube.com/watch?v=wnnFrC2x-zA

    Michelle’s discovery of Borrelia was confirmed by US Professor of Microbiology & Molecular Genetics, Alan Barbour who had worked with Wihelm Burgdorfer who discovered Lyme disease.

    Why wasn’t it followed up?
    In reference to the ABC’s 7:30 Report, Dr Wills told that the ABC was faced with legal action initiated by the competing research group over the airing of their story. She alludes that this became a major issue based on hurt scientific ego.
    When asked about her opinion of the controversy surrounding her own research and its dismissal by other researchers, Dr Wills notes that after her thesis was submitted, all funding and interest in the science of Lyme disease was halted…..She asserts that there was likely significant embarrassment in that a small, minimally funded, research group could find spirochaetes when a large lab with considerably more resources and official government funding could not.

    If you cannot accept that maybe, your above statement is wrong, then we know who and what you are

  3. Tamerlane1976Bob, it’s not particularly important to the patient community that their illness is called Lyme disease, as the LDAA’s CEO Sharon Whiteman told the 2016 Senate inquiry into Lyme-like illness. What is important to us is that we get better; that we are able to regain normal lives – to get an education, to work, to have children etc.

    We can’t do those things without treatment, and so far, literally thousands of patients have recovered after treatment designed for Lyme disease.

    As to whether there is any evidence of Lyme disease being caught in Australia, compelling research was completed in the early-mid 1990s by Dr Michelle Wills. A brief summary of her thesis can be found here: http://www.lymedisease.org.au/wp-content/uploads/2017/12/20171218-Analysis-of-Wills-thesis-.pdf

    Although Wills’ work was not conclusive, she made strong and relatively specific recommendations for further research, which was ignored.

    All of the recent reviews of evidence that I’m aware of (as mentioned in the summary) exclude Wills’ work, without explanation.

  4. Why do you publish this nonsense? I have no doubt that some of these people are sick (and not just mentally), but why is it important to them that they be told it is a particular illness and not another. It may even be in some cases a tick borne illness. There is no evidence that Lyme Disease can be caught in Australia. Why didn’t you mention that a lot of the treatments described are performed by quacks such as naturopaths, and not by doctors? What nonsense are you going to write an article on next, Morgellons?

Leave a Reply