Not seen, not heard: The plight of Lyme disease victims

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Doctor and former MP Kerryn Phelps has talked openly about Lyme disease (screenshot via YouTube).

Almost four years after a Senate Inquiry heard detailed accounts of the ongoing tragedy of Lyme disease in Australia, there has been no significant action from the Government.

The Inquiry heard that thousands of patients are struggling without treatment or support, as well as that untold numbers of people infected with Lyme are languishing fatally with a range of misdiagnoses.

First-line contacts in Australian health settings remain untrained in Lyme disease diagnosis. Centrelink remains unaccepting of tick-borne illness for payment. Brave doctors who treat Lyme and demonstrably save lives remain professionally persecuted by AHPRA. Patients languish for decades in a state of disability.

Additionally, no public awareness campaign has been conducted to inform the public of the dangers of ticks, or to ensure that patients diagnosed with ME/CFS, multiple sclerosis, Lou Gehrig’s disease (ALS), Parkinson’s or dementia are screened for “the great imitator” in Lyme.

Lyme is still destroying marriages. It is still driving families apart and bankrupting them as they seek treatment for their loved ones interstate or overseas.

The position of the Australian Government has long been that Lyme disease, which refers to infection with any bacteria from the complex Borrelia burgdorferi sensu lato, does not exist within Australian borders.

It seems only WA National Party Leader Mia Davies has pointed out the irrationality of this:

'This pandemic has now swept the world and it is implausible that vectors can cause incredible pain and suffering on every continent except Australia.'

While the 2016 Senate Inquiry ostensibly reviewed the evidence of domestic infection, it also heard that Australians who travel to endemic areas overseas and are infected are reporting to medical facilities with symptoms upon returning but are never offered clinical diagnosis, testing or treatment. Many go on to develop disabling life-long disease. It is indeed difficult to know how to direct intelligent conversation towards jet-setting leaders who seem naïve to the fact that people – and insects – nowadays travel.

The science regarding locally-acquired Lyme disease favours its existence. The single study concluding it isn’t here is based on tick gut analysis and is dated, limited and flawed. It investigated only one strain of Borrelia – the American Borrelia burgdorferi sensu stricto – when it is now known that there are over 300 other strains worldwide and that different continents tend to have their own native disease-causing variation.

It also looked mostly at ticks that were in a stage of development where the bacteria were difficult to detect. The researchers in the study did not find live, American, spiral-shaped Borrelia in Australian ticks but did find other spiral materials, which they dismissed as “artefacts” based on their similarity to findings in a tick study from Missouri.  

In that Missouri study, the assumption of Borrelial non-existence was also made. However, this has since been proven false and Borrelia confirmed to exist in that area. The “artefacts” in the Missouri study were spirochaetes – the spiral bacteria that causes Lyme.

Conversely, a PhD thesis by Michelle Wills from Newcastle University documented that it was highly likely an Australian strain of Borrelia was common in local ticks. These conclusions match far more closely with reported symptoms found across all states of Australia, though it should be noted Australians have also been seropositive for the American strain.

Wills’ findings were confirmed by an international Lyme expert who reviewed the bacteria found in our ticks. Local infection is further supported by published patient studies like those done by Peter J Mayne and Catherine Maud, who both found patients infected with Borrelia who had never left Australia.

That the Government continues to religiously cling to the first study in order to deny patient treatment is so cruel and logic-defying that it beggars belief. Some may quibble that the bacteria have not been identified to a standard of scientific certainty.

I would argue that from a human rights perspective, symptomatic patients should be offered treatment even if the pathogen has not been located anywhere whatsoever. However, led by tick bite history, symptomology, blood results, studies and successful cases, there is indeed strong evidence of what is causing illness in Australia.

Blind Freddy could see that these patients are sick with the same or similar condition and that Lyme treatment works if you can get it. So why are we denying it? Conclusive evidence is missing because follow up studies to the work of Wills were never funded and any potential harmfulness of antibiotics pales into insignificance compared to an untreated spirochaetal infection, which can corkscrew into the brain.

The pathway to “don’t treat” as a medical maxim has been paved by tricks of language in the mainstream media. Vague terminology, like patients exhibiting “medically unexplained symptoms” and “general fatigue,” is inexplicably used in regards to Lyme, even in scientific studies. Many patients, in fact, have tough, rough skin rashes, fibrous tumour growths, swelling, visual disturbances and neuropathies which demonstrably shrink with treatment and grow again when treatment has ceased.

The cynical term “fatigue” was likewise used to denigrate sufferers of myalgic encephalomyelitis (CFS) for years, when in fact they, like some Lyme patients, couldn’t rise from bed, couldn’t lift a plate and couldn’t view bright light. One is left wondering if the authors of some of these political-sounding documents have met any patients at all.

Similarly, Lyme patients, who are often working-class due to the outdoors nature of ticks, have been portrayed as neurotic, malingering, hypochondriac and insane. When you consider that one result of this propaganda is the death of a woman who presented clinically with a tick bite and bullseye rash, only to be subjected to years of electroconvulsive therapy for “psychological illness”, it feels like a time warp.

Indeed, as I despaired at the situation recently, my mother recalled that “no one really cared about AIDS until the haemophiliacs started getting it. Alas, Lyme patients the world over are waiting for their haemophiliac moment: the day the public realises they are just an insect bite away from possible disability or death and begin to demand change.

Lyme is politicised. Patients have been caught up in the baseless trashing of natural medicine that is happening across all Western countries. The mainstream media has managed to position preventative self-treatment with well-researched plant compounds that ancient peoples and even animals use and on which most of our modern medicines are based, as a fringe concept. This is patently because it empowers individuals and threatens pharmaceutical profits.

What must be understood about Lyme research is what one academic drily noted to me: “there’s no money in it". With no effective pharmaceutical treatment in sight, late-stage Lyme patients who employ natural antimicrobials are simply using what medicines they can to remain functional. An explorer who uses quinine to treat malaria in the form of a gin and tonic is seen as a creative and resilient hero, while Lyme patients, for performing the same activity, are somehow pilloried as anti-science flakes.

Having spent many years discussing this topic with all segments of society, I am simply aghast by the ease with which people flip flop down avenues of arbitrary reasoning in order to reach their lazy conclusion: ignore Lyme. If the patients survive, it can’t have been that "serious." If they die, it probably wasn’t Lyme. If they recover, it’s the placebo effect. If a sick person tests positive, it’s a false positive.

That these avenues begin and end with an unyielding model of industrialised medicine in which the onus is on vulnerable patients to navigate absurd differences between global and local knowledge silos, while no humane process exists for treating emerging illnesses, is the crux of the problem and it requires exceptional fortitude to address.

Forty years after AIDS, sufferers of such illnesses are still left to be opportunistically maligned within the political agenda of the day and it is no less a global disgrace.

You can follow Leisa Woodman on Twitter @LeisaWoodman.

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