For months all I’ve heard are quotes from “experts” (and I always prick up my ears when I hear the term ‘expert’ – many are self-proclaimed and have an agenda) saying, “There’s no evidence demonstrating Lyme disease exists in Australia“. A study to determine whether Lyme exists in Australia was performed in 1994 and is considered unremarkable with poor conclusions, and did not test persons presenting with Lyme symptoms. I’m unsure whether the research was solely based on the classic deer-tick Lyme from the USA or whether the research extended beyond the States. I’m fuzzy whether they only tested ticks for a very specific form of Lyme on the eastern coast of Australia and ignored prior research that may have had a profound influence on their own. On its website, The Karl McManus Foundation states only one strain was tested. Other studies in Australia, unfortunately not recognised by the then government, found Lyme strains in 1959, 1962 and 1994 (in a different study), cross-referenced from the above links. There are clearly different strains of Borrelia and not just one. For example, Queensland has its own: Borrelia Queenslandica. How many more are there, and why didn’t the research incorporate them all?
There’s no evidence that a person has a number of chronic illnesses. For example, I was diagnosed with chronic fatigue syndrome (CFS) eight years ago and there’s no evidence I have it: no blood test can detect it, no ultrasound or x-ray, no other specialist clinical arrangement can tell me definitively that it’s CFS. We can’t go through life blindly doubting something is real: not because of a lack of evidence or faith, but because of a lack of finding evidence, poor collection or evidence, or simply not looking for evidence in the right places using the right tools. Archaeologists don’t use explosives to excavate bones. It’s insane. Many sites, foreign and domestic, list CFS as a misdiagnosis for Lyme disease. Lyme is also called “the great imitator” (eg, here) because it mimics so many other chronic illnesses (including CFS).
When I was diagnosed with Lyme disease (and recovered substantially within just 6 weeks of treatment), I scoured the web looking for answers. I had many questions – not just obvious ones like ‘what is Lyme disease‘, but I pondered things like, ‘where does Lyme come from‘, ‘why doesn’t Australia recognise Lyme‘, and a wealth of terms to determine what action Australia has taken over the years to reach the conclusion that Lyme doesn’t exist. On my journey I’ve come to admire viruses. Lyme disease is elegant. I wonder whether nature or man created it, and I’ll cover both in other articles.
What I found surprised me because I thought science was a branch of thought that systematically dealt with studying and experimentation including data collection, analysis, and objective conclusion. I think the reason scientists advise there’s no evidence to suggest Lyme exists in Australia is because they’ve not effectively studied and experimented with relevant evidence to support any theory.
This evidence must not be limited to attending a particular place, collecting ticks, and looking for Lyme. This paper clearly states that, “evidence for the presence of B. Burgdorferi or any other related aetiological agent remains confused or unsubstantiated” which in my view is – in less words, saying, “oops we got it wrong”. I’m concerned the new research for Lyme in Australia is being based on false assumptions before it starts. Lyme sufferers worldwide know how hit-and-miss laboratory testing of Lyme disease is. Many Lyme literate doctors don’t make a diagnosis solely on a blood test – including mine. It’s a clinical diagnosis that’s comprised of many factors including a patient’s history and symptoms. I personally don’t remember being bitten by a tick, nor do I remember the classic bullseye rash. It’s surprising how many people don’t regardless of the CDC link. In Australia, it’s not clear whether a person will even get a bullseye rash. Nobody I know remembers it.
Another factor is the origins of Lyme. It’s commonly known that it was first found in [Old] Lyme Connecticut. Because the term “Lyme disease” is reduced to a very small part of the world, many governments – including its origin within the United States of America – refuses to accept Lyme disease as a bona-fide illness. I’ve watched countless documentaries, both commercial and amateur and many doctors treating Lyme aren’t only putting their reputation at risk, but their clinical practice and for an unfortunate few, their licences, livelihoods and personal assets. Lyme disease may be different geographically, whether through evolution or adaptation to their hosts and this may contribute to the difficulties in detecting the illness. There are different strains and it may be possible more are discovered in the future. It’s also concerning that Australia may only focus on ticks as transmitters of this insidious disease.
Stealth infections are called ‘stealth’ for a reason, and a clinical diagnosis is important. I’m bewildered by the story of Otzi the Iceman. (Is it me or does Otzi look like Chris Christopherson?) Numerous sources, including Wikipedia, state Otzi is the first known human who contracted Lyme disease yet other sources such as National Geographic state he “likely had” Lyme disease. Thousands of years later and Australia still denies it exists. Laboratories the world over report false negatives and false positives, yet so many sources cite Otzi as the definitive truth that it debunks other theories about how Lyme disease started. Because of the hit and miss affair of detecting Lyme through blood, many doctors perform a clinical diagnosis. Lyme evolves and varies; there are many strains, so I’m not convinced that Otzi has the identical Borrelia many of us sufferers deal with daily. Some doctors think the prevalence of Lyme in today’s society is due to diet, and Lyme has been around substantially longer than Otzi.
Amazing. Thousands of years in the making and Australia still denies it and thinks a blood test is the definitive answer. Land of the kangaroo or land of the ostriches? I’m hoping with new research they look into other tick borne diseases and expand the scope beyond the classic Lyme spirochete, as it may have evolved or adapted to the Australian climate.
The first Lyme diagnosis in Australia was in 1982 which was based on clinical symptoms – not a blood test. This doesn’t imply that it’s only existed from 1982, but some bright doctor had the knowledge and vision to determine the illness. It isn’t that long ago, yet, more than 30 years later we still have no answers. The Australian government hides behind the well-used term that Lyme can only be caught overseas regardless what evidence is supplied. The well known case of Karl McManus, an Australian man who died from Lyme disease, was the instigator for the Karl McManus Foundation which focuses on providing awareness and advocating change within Australia for the acknowledgement of Lyme.
There are a number of reported deaths in Australia due to Lyme, including this one. I picked this article specifically because of the response at the end by the Department of Health and Ageing, quote:
“There is no indication that the disease has become established in Australia. The department will, however, continue to monitor the situation in conjunction with the states and territories through the Communicable Diseases Network of Australia.”
Let’s dissect this. There’s no indication because the Government’s not been looking for one. It’s the same as saying there’s no evidence that a bottle of beer can build an aeroplane. It simply hasn’t been measured. Ironically there are many people presenting with Lyme symptoms. I think that’s a rock-solid “indication” in conjunction with numerous studies providing advice that it exists. Second, why does it have to be established in Australia? If a person returns overseas and presents with Lyme then they still require treatment within Australia. Third, I’m unclear what “monitor[ing] the situation” means. GP’s are not trained to recognise Lyme so how can then diagnose and report it? Those that are trained are under no obligation to inform any Government department. It simply isn’t recognised with no current pathways for any clinician to report. Additionally, the article was published in March 2012 but a committee to provide advice about Lyme in Australia doesn’t appear to have met until a full year later (source). Further, a scoping paper to determine research needs for an investigation into the disease wasn’t published until September 2013. That isn’t monitoring. That’s ignorance. I have no idea how monitoring the situation “in conjunction with States and Territories through the Communicable Diseases Network of Australia” even works (from March 2012 per the statement). I’ve found nothing on their website or any website connected to any State or Territory in Australia to justify the claim over that timeframe. Please leave a comment and link if I’ve missed it. I’m always open to constructive criticism to expand my knowledge.
To contradict its own statement, the Australian Health Protection Committee which is comprised of the States and Territories of Australia and established to coordinate a national approach to include communicable disease [which includes Lyme], in its meeting on 08 August 2012 (five months after the odd statement provided above) concluded the following:
“A review of current data by PHLN [Public Health Laboratory Network] shows no evidence that Borrelia species that cause Lyme disease are present in Australia, and that it is likely that the results from the United States laboratory testing are false positive results.” (Source) I dare not comment on this. It could take a while.
Fast forward to August 2013 when the Australian Chief Medical Officer (CMO) Chris Baggoley wrote to clinicans to provide an updated viewpoint about Lyme disease in Australia. This communication leaves me somewhat ambiguous. It’s a positive letter for Lyme sufferers and provides a three-tiered stream of advice to assist in determining the causative microorganisms, vectors, diagnostic pathways, and appropriate treatment. It provides for indigenous causative organisms which may be too narrow and initiates awareness about Lyme for returning overseas travellers. I both trust, and hope, the CMO will consult doctors currently treating Lyme in Australia to assist this research.
In 1959, Australia found evidence of Lyme. Fifty-five years later we’re still scratching our heads. Personally I think Chris Baggoley is taking perhaps the largest step in the last 55 years to determine whether Lyme does or does not exist, and to establish diagnostic and treatment pathways. My concerns, and perhaps the concerns of others, is to ensure that the work going into this research is not only particular to Australia to include all strains of Lyme. Personally I would like these discussion papers to deal also with the insidious coinfections that a large proportion of sufferers also have to deal with. Lyme is not the full story and I remain apprehensive about the future.
It will be a mockery if the research concludes that Lyme (and other tick borne illnesses) does not exist in Australia. This will be a devastating outcome. I simply can’t imagine it. My life was hell until I found a doctor who diagnosed and treated me for Lyme.
In summary, this article is a brief introduction to Lyme in Australia. I must take my hat off to Chris Baggoley for having the guts to recognise there’s a public health issue that may be due to Lyme disease. It’s a positive and proactive move that has the potential to enhance tens of thousands of sufferers. I salute him yet I’m profoundly scared the conclusion of this new research will be that Lyme still does not exist in Australia.