It was on a warm sunny Saturday in early 2013 that Chantelle Wegner began to wonder if she was losing her mind. She had lived in the Melbourne suburb of Richmond for five years, but on that clear summer’s day, in a daze that would escend like a fog in coming months, she found herself travelling around the once familiar streets without the faintest idea of where she was. She could feel the blood pounding fiercely in her head with each heartbeat, while sudden, dizzying rushes of vertigo left her reeling. Even the soft white light dancing off the footpath was blinding.
In the preceding days, she had been gripped by headaches that had crushed her like a vice and sent pain cascading down her face, neck and shoulders. Now she could feel her brain faltering as well – lost in her own neighbourhood? – and it terrified her.
“I thought I had a brain tumour,” says the 38-year-old primary schoolteacher.
She didn’t, but she was desperate to discover what was wrong with her, especially as the blinding headaches were getting worse. Why was she suddenly so ill and exhausted? How had she gone from a sports-mad, super-fit young woman to this enfeebled creature?
What she didn’t know then was that she had joined thousands of Australians suffering from a constellation of symptoms, which some believe are evidence that Lyme disease, a debilitating tick-borne illness, exists in Australia – even if authorities remain unconvinced.
Its controversial status might explain why Chantelle had so much trouble finding answers. Over the next five months, she visited at least half a dozen doctors, an osteopath, a physiotherapist and a Chinese herbalist.
“Most of them didn’t have any idea what was wrong, as all my test results came back normal,” she says.
In time, she became so weak and troubled by pain, she could no longer work. Chantelle’s husband, Paul, was frustrated and upset to see his pretty, vibrant wife not only falling apart physically, but being told it was all in her head. He, too, was desperate for answers. “Paul came to the doctor with me, the one that said I should see a psychiatrist,” says Chantelle. “I was bawling and Paul kept saying, ‘No, there’s something that’s not right.’ He felt like he couldn’t help me. He’d say, ‘Why is this happening to us?’
It was Chantelle’s sister, Rachelle, a nurse, who had begun to suspect that the mysterious ailment that was plaguing her sister might just be Lyme disease. A complex, infectious disease caused by bacteria carried by some ticks, it was named after the town in Connecticut that experienced an outbreak in 1975.Could this dramatic change in Chantelle’s health have been caused by a tick bite? She knew that a fortnight or so before the onset of her symptoms, she had come back from Perth with an unwanted visitor.
“I woke up the next morning with something on my arm,” she recalls. “My husband said, ‘That’s a tick!’” Chantelle had removed it with a pair of tweezers and thought no more
of it. She had mentioned the bite to doctors and therapists but no-one had thought it relevant.
“I was told I was crazy and that I should see a psychiatrist. But when you have excruciating pain all day, every day ... I wasn’t making it up.”
Now, at least, she had a theory.
She had no idea, however, of the hurdles that lay ahead.
While Lyme disease is recognised in the US and across Europe, Australian medical chiefs insist there is no evidence it exists here. Although several medical practitioners claim to have diagnosed the illness in patients, positive laboratory tests have been disputed and ticks in this country have not been found to be carrying the borrelia bacteria, which causes Lyme. Meanwhile, the Lyme Disease Association of Australia estimates there are 300,000 Australians currently living with the bacteria-borne illness, or some version of it.
After five months bouncing from doctor to doctor, Chantelle tracked down a so-called “Lyme-literate” doctor through the Lyme Disease Association’s website. Blood tests for Lyme are notoriously unreliable, so Chantelle’s bloods were sent to the US for more extensive analysis (the reliability of those tests has also been questioned). When the results came back positive, the doctor put Chantelle on an intensive six-month course of antibiotics, although that came with its own problems. She has also spent thousands of dollars on alternative and some “crazy” treatments, as she puts it, but still suffers from lethargy and headaches and can only work part-time.
For Chantelle, it has been a devastating journey. A stylish woman with long brown hair, she breaks down and cries as she reveals one of its heartbreaking consequences. The disease has robbed her and husband Paul of the chance to have children, she believes, although experts are divided on whether Lyme can be passed on in utero.
“Before I got bitten, we were looking at having children and that for me now is a near impossibility,” she says. “No-one can tell you that it’s not going to be passed on and I just can’t take that risk.”
Fiona Hall’s body had been failing her for four years. In that time, she had lost 12 kilograms through muscle wastage, her hair was falling out and some days she could barely walk.
Then came the terrifying day two years ago when her pulse suddenly shot up to 140bpm and she was fighting for breath. She felt as if she were having a heart attack. Her husband raced her to
a Sydney hospital emergency room, where doctors told the 39-year-old mother-of-two something she’d heard too many times before: her problems were all in her head.
“I knew full well there was something terrible going on with my body,” says Fiona, a registered nurse who’s been too sick to work for the past few years.
Fiona’s nightmare began in 2010. “At first I noticed my strength going,” she says. “I was having trouble lifting bags of groceries and problems with coordination. I was going from doctor to doctor and having every test under the sun.”
Her health continued to deteriorate dramatically, to the point where she ended up in casualty. “The hospital said it was just anxiety,” recalls Fiona’s husband, Nick, 42, “and we said, ‘She’s anxious because her heart rate is 140!’”
In April last year, she finally found a sympathetic Sydney GP, who had seen a number of patients from Sydney’s northern beaches, where ticks are rife, with a similar suite of symptoms. “All my symptoms made sense to her,” says Fiona. “She said, ‘I don’t think you’re crazy – I think you’ve got Lyme disease’.” Fiona’s blood was sent to the US for testing. It came back positive.
Fiona and Nick’s ordeal worsened when they realised their son, Max, nine, and daughter, Jessica, five, may also have the disease. Fiona believes she was bitten by a tick 10 years ago – she doesn’t know where – and passed the disease on to her children in utero.
“My son has had health problems since birth,” she says. Two years ago, Max became very sick. “He started having more days off school than in school,” she says. “Something changed in him. We didn’t know what it was but there was something going on.” Soon, both children began getting joint pain in their knees and were finding it difficult to walk. Doctors dismissed her concerns as those of an overprotective mother. The Halls had blood from Max and Jessica tested in the US and the results came back positive.
In 2014, the Halls decided to take drastic action. Getting nowhere here, they sold their Manly home and travelled to Germany to undergo a pioneering new treatment called whole body hyperthermia, which costs upward of $21,000 per person. The controversial two-week treatment, accompanied by a course of antibiotics, involves anaesthetising the patient and then heating their body to 42°C. The borrelia bacteria dies at 41.5°C. Doctors at the clinic say the disease can be transmitted sexually, so Nick has undergone hyperthermia treatment, too. The Hall children are too young, so they had something known as “fever therapy”, which artificially brings on a fever to fight the bacteria.
Fiona, who is still weak and recuperating from the treatment, expects it to be at least six months before she sees any improvement.
“Max said the other day, ‘Can we never talk about this again, Mummy?’ Their childhood has been consumed by Lyme,” states Fiona. “This is the sad thing – it’s all my children have ever known. All they’ve heard about is this fight against Lyme.”
The complexity of the disease is mind-boggling,” says Dr Mualla McManus, a Sydney-based clinical pharmacologist convinced Lyme, or a Lyme-like disease, is here in Australia. The 52 year old’s interest is deeply personal. Dr McManus believes Lyme complications killed her husband, Karl, after he was bitten by a tick in 2007 in bushland on Sydney’s northern beaches. In 2010, she set up the Karl McManus Foundation to fund research to identify “exactly which Lyme bacteria exists in Australian ticks and patients”.
“People are getting frustrated because in Australia there is no expertise in treating this disease,” says Dr McManus. “There are a couple of doctors who do attempt it but you need to have a lot more in-depth understanding of the pathology and the treatment because it’s not a simple disease.”
So if thousands of Australians believe they are suffering from this life-destroying illness, why hasn’t the government recognised it?
Sufferers say the denial of Lyme disease here is based on a narrow study done 20 years ago which looked for borrelia in Australian ticks and didn’t find it. In 2012, a Clinical Advisory Committee on Lyme Disease was convened by the federal
government’s chief medical officer, Professor Chris Baggoley, following a request from the NSW chief health officer, Dr Kerry Chant. It failed to resolve the controversy, concluding its work last year without being able to establish whether or
not Lyme disease-causing bacteria are present in Australian ticks.
However, a Health Department spokesperson says they will continue to search for evidence of bacteria responsible for Lyme or a Lyme-like disease. The department has established a website (health.gov.au/lyme-disease) with advice and updates. The Australian Medical Association merely says it has no official position on Lyme disease.
Formal recognition of Lyme in Australia could lead to improvements in diagnosis and awareness. Yet, even in the US, where it has been officially recognised for decades, the issue of proper diagnosis and treatment is incredibly complicated because Lyme disease is maddeningly difficult to diagnose and can look like a lot of other illnesses – from flu to multiple sclerosis. It presents as many as 150 different symptoms and is typically accompanied by co-infections. Antibiotics are generally used to combat the bacteria, although the possible side-effects of long-term treatment with these drugs is another concern.
There may be no silver bullet, says Dr McManus, but there is hope for Lyme sufferers if the disease is caught early. “You can’t eradicate borrelia bacteria from your body,” she says. “It’s like having malaria – once you have it you can never get rid of it. What you can do is control it – you can decrease the amount of the pathogens and build up the immune system so the symptoms aren’t there, and the patient can continue to have a normal life.”
Chantelle Wegner admits she plummeted into a depression when she realised she may always be plagued by Lyme. “We all just want a quick fix and I guess part of the journey for me is to realise that’s just not going to happen,” she says. “It’s a matter now of managing it. But there are times when I see someone going for a jog and I think, will I ever be able to do that again?”