An increasing number of people in Australia are spending large sums of money on treating an exotic disease whose existence in this country is still a matter of dispute.
Sue Sherratt was bitten by a tick in southwest Sydney back in 1985. “From that moment on, I’ve never felt right,” the 69-year-old says. She developed rashes, disordered thinking, fatigue and joint pain that confined her to a wheelchair.
Two decades and countless medical examinations later, Sherratt was diagnosed with Lyme disease – an infectious illness spread by ticks.
Sherratt’s case typifies how difficult it is to be diagnosed and treated for tick-borne illness in Australia. Initially, Sherratt was told she had toxic shock syndrome and later an inflammatory disease called sarcoidosis.
Yet, despite taking medication that typically relieves symptoms of sarcoidosis within months, her condition deteriorated.
“They kept me in hospital for quite a while because I couldn’t walk and I couldn’t talk, but it would come and go,” she said. “And because it was happening like this, they threw me out of hospital and basically said it was all in my head.”
A long-drawn-out search for answers seemed to have ended when Sherratt came across research that indicated a possible link between Borrelia burgdorferi — the bacteria that cause Lyme disease — and sarcoidosis.
Sherratt promptly consulted a Lyme-literate doctor – that is, a physician familiar with the range of symptoms likely to indicate infection – and her blood tests returned positive from an Australian laboratory.
Medical authorities insist that test results like hers are false positives, but Sherratt accepts the diagnosis, saying it impelled her to undertake the stem-cell treatment that saved her life.
“They found that I had borreliosis, Lyme disease, tick-borne disease – whatever you want to call it, it’s just a word.”
Just a word it may be, but people on either side of the debate agree that arguments over what tick-borne illness should be called in Australia have delayed progress on finding a cause and treatment.
In 2015, a Senate inquiry was called into the ‘Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients’. Over 1200 submissions were received from patients, advocates, doctors and researchers.
The Department of Health and Human Services told the Senate inquiry that the term ‘Lyme disease’ was misused in Australia, as the bacterium known to cause it had not been isolated in Australian ticks.
In 2016, a review of 25 years of research and more than 500 cases of Lyme-like illness concluded that none of them definitively identified the presence of a Borrelia species infecting humans that have a locally acquired Lyme-like syndrome.
But some experts have countered that locally acquired Lyme disease is more likely caused by an unidentified species of Borrelia unique to Australia, so testing for pathogens that are endemic overseas is futile.
Critics also say that Australian testing is not sensitive enough and cannot rule out infection. The pathogens that cause Lyme disease are notoriously difficult to find and often fail to show up in the blood. This makes getting a positive diagnosis largely a matter of chance.
In its submission to the inquiry, the Lyme Disease Association of Australia (LDAA) said: “We don’t know what people have. We do know that some people become seriously ill, sometimes after the bite of a tick, and that their symptoms closely resemble [those of] internationally defined Lyme disease.
“Call it what you may, but don’t dismiss it,” the association said.
The LDAA’s chief executive, Sharon Whiteman, said policy and research failures had hindered the diagnosis and treatment of tick-borne illness in Australia. “In what other disease are patients denied hospital care [and] denied disability care, because the research is yet to be completed?”
She said that, since the Senate inquiry ended, the situation had only regressed. “Three years later, patients are in a worse position and they’re getting less medical care than they were before.”
Advocates are convinced the clinical impasse in Australia was cemented by a 1994 government-funded study by University of Sydney researchers. The study found no evidence of Borrelia in Australian ticks.
But research published the same year found that 42 per cent of ticks collected by researchers in NSW contained Borrelia-like spirochaetes. Medical authorities dismissed these results, saying researchers merely discovered other forms of bacteria with the appearance of Borrelia.
The Senate inquiry acknowledged the study and recommended it be reviewed by a team of independent scientists. More than three years on, this review is yet to be undertaken.
While there is no dispute that Lyme disease can be acquired overseas, even people who contracted the illness abroad say they face barriers to treatment. Whiteman said doctors in Australia were afraid to treat Lyme-like illness after being threatened with deregistration by the Medical Board of Australia.
The board denies these allegations. In cases where action was taken against doctors who had treated patients with Lyme disease, the board said it was “precipitated by concerns about their health, performance or conduct”.
Yet patients like Sylvia Hanuziak, who contracted Lyme disease while overseas, said there were few doctors willing to treat the condition.
Hanuziak was in Poland when she first noticed a tick bite on her leg. She developed symptoms commonly associated with Lyme, including fatigue, muscle weakness, shortness of breath, migraines and disordered thinking.
“The symptoms came out of nowhere and they just got progressively worse and kept changing,” the 27-year-old says. “I was essentially going to a specialist for every symptom I would get … and I couldn’t get to the bottom of what was wrong for about two years.”
In 2013, a colleague who suffered from Lyme disease overheard Hanuziak’s mother discussing her condition and recommended she be tested for Lyme.
Blood samples were sent to laboratories in Geelong, America and Germany at significant cost, and all returned positive for Borrelia burgdorferi.
Exorbitant medical expenses have become the norm for sufferers of Lyme disease, who have little choice but to travel abroad for treatment. Their plight is often compounded by loss of earnings resulting from an incapacity for work.
Since her diagnosis, Hanuziak has regularly travelled to Europe to undergo treatment including intravenous antibiotics, ozone inhalation therapy, natural protocols and other alternative medicine.
Estimating the cost of these treatments at over half a million dollars, she said her parents “probably could have bought an apartment by this point, if not a house”.
Sherratt also said she had spent a considerable amount on treatment: “I wouldn’t be surprised if it’s between $200,000 to $300,000 – even more if you include loss of income.”
The LDAA’s analysis of 349 public patient submissions to the Senate inquiry found that out-of-pocket health costs averaged $42,561 per patient.
Whiteman said the LDAA was generally able to help Lyme sufferers if they could afford overseas treatment, but the situation was difficult for those who were poorer-off.
“The amount of loss that you see in our community that’s basically unnecessary – it’s just soul-destroying,” she said.
Meanwhile, there are concerns that a rise in the world’s tick population is linked to climate change, as ticks favour warmer conditions. Research suggests around 300,000 people are diagnosed with Lyme disease in the US each year, and this number is tracking up. A study last year warned that rising temperatures as a result of climate heating would drive up Lyme cases by more than 20 per cent by mid-century.