An Unofficial Disease: The Battle To Have Lyme Disease Recognised In Australia

“Can I get Lyme disease from sitting next to someone?” This is one of the most frequently asked questions on the website for the Lyme Disease Association of Australia (LDAA). The answer, for those wondering, is no — Lyme disease is often contracted from infected ticks, and it’s been found that mothers with active Lyme disease have passed the illness on to developing foetuses and through breastfeeding.

But it’s understandable if you don’t know the answer, or haven’t really heard of Lyme disease in the first place. It’s a crippling, debilitating and sometimes fatal infectious condition — according to the LDAA, around 15,000 people in Australia are currently diagnosed with it, and a devastating 200,000 remain undiagnosed. The general public’s awareness and knowledge of Lyme disease, though, remains extremely limited, because for governments and health bodies the main problem hasn’t been how best to combat it — it’s been figuring out how to properly identify it in the first place.

A historical lack of research has severely hampered our understanding of Australian Lyme disease — how people get it, what transmits it, whether they’ve contracted a recognised existing strain or an entirely new one. These are all questions we don’t yet have answers to, and for the people who have it, that can often mean years of suffering and added burden in an outdated health system.

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The Unofficial Disease

I have a friend, Tahlia Smith, who has chronic Lyme disease, with co-infections of Babesia (which is like malaria) and Bartonella. When I asked Tahlia to describe how Lyme disease feels, she said: “I don’t think anyone could describe it, it’s awful.” Currently, she is having seizures every hour. She needs constant care and treatment that is both very expensive and difficult to obtain. Tahlia doesn’t even have access to a community nurse. Instead, her mother has to infuse antibiotics through a catheter that feeds the medication to her heart every day. And every week, twice a week, Tahlia has to travel to Sydney from the Hunter Valley for further treatment. Her medical expenses are estimated to be around $1,000 a week and Lyme patients are required to pay for treatment themselves because they aren’t covered under Medicare.

It took three years before doctors diagnosed Tahlia with Lyme disease. “Anorexia,” they said because of her rapid and seemingly inexplicable weight loss, or “bulimia”. Crohn’s disease, ulcerative colitis and even irritable bowel syndrome were offered as diagnoses. Meanwhile, Tahlia’s condition deteriorated rapidly.

Three years is a very long time to be suffering from an unidentified disease; it means that a person can’t be appropriately treated or cured, and their condition becomes more advanced. According to LDAA surveys it takes approximately six years on average for people to be diagnosed with Lyme disease. In July 2014 a Department of Health advisory committee concerned with establishing whether there was evidence of Lyme disease in Australia ceased their research, unable to find evidence of Lyme-related diseases in Australian ticks, as there wasn’t enough existing research. They also stated that it’s difficult to establish appropriate treatment guidelines until an Australian strain of the disease is identified and characterised — a finding that led the Health Department to conclude that they will “maintain an interest in an Australian Lyme disease-like syndrome,” but otherwise take no further action.

Because of this official government position, some doctors are failing to recognise Lyme-like illnesses when they see them, with many patients like Tahlia denied appropriate diagnosis and treatment as a result. “The greatest tragedy is that Lyme disease is preventable,” LDAA President Sharon Whiteman tells me. There’s a distinct possibility that a unique Australian strain of the bacteria that causes Lyme disease exists, but at the moment, domestic doctors who diagnose patients with Lyme disease often do so at the risk of their professional reputation, as health authorities say there’s no evidence that Australian ticks carry the Lyme bacteria.

So in order to obtain a diagnosis, and in search of effective treatments, thousands of Australians are traveling overseas at enormous personal expense.

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Living With Lyme Disease

Tahlia is an extremely talented performer. She has performed in regional, state and national dance and singing eisteddfods, competitions and musicals. She has travelled to the United States, representing Australia and meeting with casting directors every year since 2010, until she got too ill to move in 2013. As a young girl I watched Tahlia in those musicals and competitions; I’ve been both insanely jealous and incredibly proud of her. She is the girl with the biggest smile, the loudest, most distinctive laugh and she gives the most dynamic performances. She seizes opportunity and she is full of hope. It might be a cliché, but there is no other way to describe my beautiful friend.

There is so much that Tahlia can’t do now. Performing is one of those things. Having a 21st birthday party is another. Her long struggle with this disease has limited her quality of life. Last year Tahlia was offered a place at Brent Street performing arts school in Sydney to study musical theatre. This year she was accepted at Film & Television Studio International in Melbourne. Tahlia couldn’t accept either of these offers.

And it’s a relentless battle. Tahlia has trouble sleeping at night; her spinal cord is swollen, she experiences constant headaches, leg tremors, bone and joint aches as well as terrible nausea. There’s not enough blood flow to her brain, and in 2013 Tahlia had a seizure that left her unable to walk for five months. Since then, things haven’t improved. Tahlia got a parasite and experienced acute renal failure to her kidneys, her thyroid stopped working and her liver isn’t healthy. She has lost a significant amount of weight. Her tonsils and appendix have been removed. Her body needs constant monitoring.

Last week Tahlia’s sisters created and shared a video to help raise awareness for Lyme disease. Tahlia’s youngest sister Kiara told me that the whole experience “honestly makes you feel helpless; Tahlia has been there for me since day one and now she can’t even do anything, can’t even walk.” I hadn’t realised how sick Tahlia was until I watched this video. I had read her Facebook statuses about how frustrated she was; I would post “hello” and “thinking of you” sometimes, but I didn’t understand what she was going through. Watching the video, watching Tahlia have a seizure, seeing her pale and bruised skin and her drained face, I realised that this young woman is fighting a very real and destructive disease.

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Bringing About Overdue Change

The Department of Health advisory committee acknowledged the limitations of what is currently known about Lyme disease in Australia, including the need for further research, an agreed case definition of what constitutes Lyme disease, and an agreement on the best laboratory testing algorithm to identify Lyme bacteria. So why isn’t the Department actively seeking to resolve the issues that have been identified? Research needs to be reinstated so that the Australian medical community have a framework that would allow cases to be diagnosed in their early stages, and more accessible and affordable treatments to be provided to patients.

Fifteen months ago, the LDAA put together their patient strategic action plan addressing many of these issues, but there has been no action or movement from the government since the review ended. The Department of Health last updated their information page on Lyme disease in August 2014, a month after their research ceased. If state and federal governments take no action, where does this leave my friend Tahlia and her family?

Tahlia is only one of the confirmed cases of Lyme disease in Australia. The World Health Organisation says that every year there are over one billion cases of vector-borne diseases and over one million deaths. Lyme disease is a part of that. What respect are we showing those who are suffering if we don’t speak up and seek change? I only learnt about this illness because I know a person and a family suffering from it. This is a disease we need to know more about; our governments should be implementing strategies to help patients, continue research, and educate us. 

As Lyme disease continues to spread, we need to show support for this growing community of patients. We need to lobby local, state and federal members of Parliament, and demand urgent and ongoing funding. Lyme disease needs to be formally recognised as a medical condition present and active across Australia. Tahlia’s battle with Lyme disease is our fight too.

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The Lyme Disease Association of Australia, Australia’s peak body representing patients with Lyme disease, has launched its May Lyme Project, an annual awareness and fundraising campaign. Head to LymeDisease.org.au to get involved.  

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Lily Mei is a writing and cultural studies student from Sydney. Sometimes she wishes she was an astronaut. Instead she edits Flashers for Seizure and has been working on the 2015 UTS Writers’ Anthology. Her writing has been published by The Lifted Brow, Scum, Stilts and New Matilda.