The recognition of Lyme disease still divides medical opinion in Australia.By Kimberley Thomson.
Australia ticked off by Lyme disease
In 2013, Linda Blatt took time out from her psychology placement to visit a spiritual retreat in central California. For an ebullient week she swam in hot springs, lay down in the grass, marvelled at the Big Sur coastline.
Shortly after returning to her home in Melbourne, a rash ballooned across her arm. It was large, but didn’t hurt; Blatt figured it was a spider bite. She shrugged it off and continued to see her psychology patients.
She says the proceeding months ushered in excruciating flu-like symptoms. “I was so exhausted. I couldn’t feed myself, I couldn’t do anything. Then I started getting body-wide muscle pain … and it just escalated.”
What Blatt, now 32, didn’t realise was that her unexplained rash was remarkably similar to those first recorded in the small American town of Lyme, Connecticut, 40 years ago. Over the summer of 1975, strange symptoms broke out among the town’s children: bullseye rashes and signs of juvenile rheumatoid arthritis.
Researchers realised it was children who played in forest areas who showed symptoms, the prevalence of which rose in summertime – peak tick season. They concluded that bacteria were transferred when infected deer ticks latched on to unwitting human hosts. And so, in an unfortunate fate for a small town hitherto not known for anything more significant, Lyme loaned its name to the disease.
After seeing a string of specialists, an integrative GP – one who employs complementary medicine and holistic practices – mentioned Lyme disease to Blatt. She tested positive for the bacteria that causes Lyme — Borrelia burgdorferi. By now her symptoms were so debilitating, she’d suspended her clinical doctorate and was experiencing excessive pain and severe cognitive problems. “I was sleeping 20 hours a day, and I couldn’t remember words like ‘car’.”
In its success as a pathogen, Borrelia is sublime. A long, slender, spiral-shaped bacterium known as a spirochaete, Borrelia is able to hide dormant in tissue, meaning sometimes it will flare up years after initial infection. It acts on a multi-systemic basis, with the ability to attack every tissue and every organ in the body.
The existence of Lyme disease in Australia is widely questioned. Large numbers of Australians insist they are sufferers, displaying similar incapacitating symptoms to Blatt. Many report they have not left the country. Yet, as Borrelia burgdorferi has not been definitively located in Australian ticks, the widely held medical opinion is that Lyme disease – in the form it is known – does not occur in Australia.
In 1994, University of Sydney researchers Richard Russell and Stephen Doggett reported their study finding no evidence of Borrelia in Australian ticks, which has calcified medical thinking in Australia. Previous research suggested there was some evidence, but is often dismissed as flawed. With little study completed since, a tension has been forged in doctors’ rooms. On one side of the desk sit clinicians reluctant to treat something that isn’t fully understood, on the other, patients left feeling frustrated and ignored.
Infectious disease specialist Professor Miles Beaman, at the University of Western Australia, says Lyme disease should not be diagnosed in Australia. He says patients are often diagnosed “by non-experts in the field” and that blood tests sent overseas by patients looking for diagnosis elsewhere are not stringently regulated and return problematic results. Beaman says: “There’s no doubt that there’s a group of people that have troublesome symptoms, and that doesn’t mean they don’t have a real problem. But I think it’s not doing patients a service, giving them a false diagnosis [of Lyme].”
In 2013, the Department of Health’s chief medical officer, Professor Chris Baggoley – the Australian government’s top medical adviser – instigated the national clinical advisory committee into Lyme disease. Baggoley urged doctors “to keep an open mind” on the issue, and suggested there may be a “Lyme-like” illness in Australia. Potential research projects were identified, but when it convened in July 2014 the committee concluded that until a “causative agent” – such as the Borrelia bacteria – is located in Australia, it would be difficult to provide comprehensive research funding.
Advocacy group the Lyme Disease Association of Australia laments that the advisory committee has not translated to action. Association president and diagnosed Lyme sufferer Sharon Whiteman says: “There’s no progress for patients. It hasn’t changed their experience in the emergency department or the doctor’s office. Even providing a letter that directs them to keep an open mind to Lyme disease, that hasn’t changed anything. We have a growing number of people inquiring, and a shrinking number of doctors open to treat.”
Dr Mualla McManus, researcher at the tick-borne diseases unit of Sydney University, and founder of advocacy body the Karl McManus Foundation, takes issue with the term “Lyme disease”. She prefers “borreliosis”, to sidestep linguistic baggage. “If you use that word, you are not putting politics into the disease, and you are opening the mind of the clinicians to think outside the square,” she says.
McManus’s team is attempting to locate the elusive Borrelia bacteria or a similar agent. It is possible an unknown strain of the bacteria exists in Australia. A separate study is being conducted by Dr Peter Irwin of Murdoch University, which suggests Borrelia still cannot be found. Otherwise, research in Australia is scant.
In America, the disease is endemic. The Centres for Disease Control and Prevention (CDC) cite an estimated 300,000 new US cases of Lyme disease each year. The main dispute here is over whether the disease can become chronic. The CDC believes a swift few weeks of antibiotics is enough to eradicate the bacteria. Yet, this is not reflective of the experiences of many Lyme patients, who report their symptoms lingering long after treatment.
As she was bitten in the US, Blatt’s case is less contested than those claiming to be bitten in Australia, but doctors have disputed the longevity of her symptoms and she has struggled to receive continuing treatment. Most Australian doctors remain hesitant to diagnose Lyme disease, and those who do are considered “fringe practitioners” by the wider medical community.
Dr Peter Mayne, of the Sydney Lyme Clinic, says he has seen close to 750 Australian patients with Lyme, both the acute version and the disputed chronic, neurological type, which he says often “gets mistaken for other diseases such as MS, motor neurone disease, Parkinson’s, and so on.”
Mayne suggests that since he started researching Lyme 25 years ago, more doctors and specialists have softened their opinions on the disease, but not openly. “They’re hiding under the covers at the moment; they don’t want to be quoted publicly.”
The wider infectious disease research community, however, says treating for Lyme in Australia is irresponsible. Beaman warns “serious complications” can arise from the prescription of long-term antibiotics.
With slim hopes of ongoing treatment at home, Australians with Lyme symptoms are looking overseas. Near the foothills of a Bavarian mountain, the Klinik St Georg is being flooded with Australians. As part of a holistic treatment plan, the clinic provides hyperthermia – the process of heating the body to 42 degrees to kill bacteria.
Blatt was one of the first Australians to arrive at the German clinic. She underwent therapy and, for a few months afterwards, she was well again. She drank wine at her friend’s wedding, danced for the first time in months and prepared to go back to study.
Then a pain swelled at the back of her head. She discovered she has two other infections resulting from the tick bite: Babesia and Bartonella. Over time, these co-infections overwhelmed her system and her health slid slowly backwards.
Blatt is considering returning to Germany for further treatment. She desperately wants to get well to become a therapist specialising in chronic illness. When struggling with a little-understood condition, says Blatt, “you need people who are on your side”.
Other countries are implementing strategies to unpick the controversial nature of the disease. Canada recently passed legislation towards a federal strategy on Lyme. Brazil has formally renamed its “Lyme-like” illness. In Europe, it is common to get diagnosed and treated quickly.
In Australia, disagreement continues. Unless the evasive causative agent of Lyme-like “borreliosis” is definitively discovered to be present in Australian ticks, it seems a clinical impasse will remain in place.
This article was first published in the print edition of The Saturday Paper on May 23, 2015 as "Ticked off". Subscribe here.