Pathologists weigh in on the debate about a disease many Australians say they are suffering from, but the medical community does not believe exists
Researchers and pathologists Peter Collignon, Gary Lum and Jennifer Robson have conducted an analysis of Lyme disease in Australia, published in this week’s issue of the Medical Journal of Australia.
They report that there is “no convincing evidence that classic Lyme disease occurs in Australia, nor is there evidence that the causative agent, Borrelia burgdorferi, is found in Australian animals or ticks.”
They add that positive test results in which there was no overseas exposure are all likely to be false positive test results.
“Until there is strong evidence… treating patients with ‘Lyme disease-like illness’ with prolonged intravenous or oral antibiotic therapy is both unjustifiable and unethical, and is likely to do much more harm than good.”
Lyme disease-like illness
Collignon, Lum and Robson argue that the label “Lyme disease-like illness” suggests that chronic Lyme disease is a recognised medical diagnosis, whereas its validity remains contentious.
Although they concede that “while there is no compelling evidence that classic Lyme disease exists in Australia, Australians do acquire unusual novel infections as well as more commonly regonised infections from ticks (e.g. rickettsiosis). Some may have illnesses caused by tick-borne bacteria or viruses that are yet to be identified but which may be widely distributed in Australia.”
Meanwhile they say that Lyme disease can be acquired overseas but diagnosed in Australia.
This does not present any hope from the hundreds of Australians who claim to have been infected in the country.
In November 2015 the Senate launched an inquiry into the epidemiology, diagnosis, treatment, and investigation of Lyme disease.
Due to the double dissolution election on 2 July 2016, the inquiry was dropped then re-adopted by the current parliament on 13 September 2016. A reporting date is set for 30 November – two weeks from now.
So far there have been 1268 submissions to the inquiry.
Here is a selection of excerpts:
“[My sister has had] positive blood tests for serum relapsing fever Borrelia, Borrelia miyamotoi, Borrelia burgdorferi.
“…She has been treated like a drug addict, treated like she was faking an illness, told that she was not to waste a hospital bed, discharged without discharge papers and without waiting for a carer before allowing a very sick, incoherent, confused person to leave the hospital.” – Emily O’Sullivan (On behalf of sister Amy O’Sullivan)
“Sufferers are mocked and or humiliated when stating how sick they are at hospitals when lab tests prove inconclusive.” – Alexandra Patsan
“A tick bit me in late October 2012 at the back of the head just inside the hairline. At work during December 2012 I had strange bouts of dizziness and sweats, this increased in frequency… Arriving home I became increasingly unwell over the week and more symptoms appeared: fatigue; tingling feet, hand, tongue and lips; low grade fever; heavy night sweats early morning; swollen glands; slight palpitations; irritability and anxiety; headaches.
“I was informed after testing that there was nothing wrong with me and I probably had a case of Depression. I explained that all my symptoms appeared after a Tick bite and that the symptoms resembled Lymes (sic) Disease. I was informed, “There is no such disease is present in Australia and that you had been tested for Lymes Disease and all other tick pathogens and nothing showed.
“In April 2013 on recommendation I saw a doctor [in] Queensland who specialises in Lymes (sic) Disease. Blood samples were taken … in the US. They came back as positive for Borrelia… [Antibiotic] treatment continued for over a year with great improvement to my health, until [my doctor] was stopped from treating Lymes patients by AHPRA.
“It’s now three years later and I am in the final stages of recovery. The cost of treatment is enormous and the time unemployed has taken a huge chunk out of our savings. This is a direct result of the denial of ‘Tick Bourne (sic) Diseases’ existing here in Australia as well as the diabolical treatment of the brave doctors who support us by AHPRA. Prior to this Disease I have never been sick in my life.” – Paul Fenwick, NSW
“I am Canadian citizen who travelled to Australia in 2001. I was bitten by a tick in the Australia after walking in the Bournda and Mimosa Rocks national parks area. Upon my return to Canada, I developed severe fatigue, mental fog and then a bullseye rash on my leg at the site of my bite. I was tested by my doctor at the Canadian Government approved and funded provincial health lab. My test results were equivocal.
“…My new family doctor referred me to the BC Center for Disease Control. The doctor there refused my referral because he relied on your misinformation that there is no Lyme in Australia. I could not get treatment even though I was clearly ill.
“In 2013 I sought treatment from a Naturopath who specializes in Lyme treatment. I had no other option because of your misinformation. In the province of BC where I live, Naturopaths are legally allowed to prescribe antibiotics. I undertook approximately six months of treatment using a cocktail of antibiotics. My health drastically improved.
“By denying the existence of Lyme disease, you are not only harming Australians but also tourists like I because the medical community parrots your misinformation and denies treatment based on that misinformation. Please end this silliness. Some members of your medical community are exhibiting cognitive bias called the ‘backfire effect’. The stronger the evidence of Lyme in Australia, the more strongly they defend their incorrect and harmful beliefs. This leads to further harm to people like me as far away as Canada.” – Mark O’Meara
“I believe I contracted Lyme Disease on a school camp when I was 13 years old… I have never left Australia and I have positive Laboratory reports from Australian Biological Laboratories in Sydney, Infectolab in Germany and also Igenex in America. By the age of 15 I was constantly experiencing flu like symptoms, running nose, sore throat, swollen glands, hay fever type symptoms, severe lethargy, difficultly concentrating, tight and sore muscles and post exercise malaise.
“I would like the Australian Government to recognise that there are several different bacteria infecting Australians all around the Country with symptoms mimicking Lyme Disease. You can call it a tick borne illness, you can call it Lyme Disease or just a bacterial infection, we don’t care. Just recognise that we are suffering from a real illness that is extremely debilitating and allow the medical practitioners in this country to treat us without harassment.” – Bronwyn, WA
Read more submissions here.
Lyme disease & stigma
Although the authors of the MJA article conclude that the case for Lyme disease in Australia is weak, they don’t end there but highlight the stigma felt by patients.
“The most effective way to reduce this stigma is to concentrate on appropriately funded research and clinical studies on discovering any bacterial or viral causes for such a chronic debilitating illness.”
They also cite the considerable degree to which those who claim to have Lyme disease-like illness have symptoms that overlap with those of chronic fatigue syndrome.
“If we focus attention on patients with constellations of chronic debilitating symptoms in Australia, diagnostic assessment will initially include a research component… this will be of great benefit for identifying the many uncharacterised viruses and bacteria that probably occur in ticks, animals and people in Australia.”
Australia’s Chief Medical Officer, Professor Brendan Murphy, issued a statement in October expressing concern at the “many Australians suffering from the symptoms of a chronic, debilitating illness, which many associate with a tick bite; whose lives are in turmoil because their illness cannot be easily diagnosed and treated.”
“Some patients and their health care practitioners believe this debilitating illness is due to chronic Lyme disease… To date the organism that causes Lyme disease has not been found in Australia.”
Professor Murphy states that the Australian Government continues to look for research evidence that may assist in determining the cause of the chronic debilitating illness.