Grace Currey, 18, brought home an unwanted souvenir from a holiday in the US: Lyme disease.
I was 12 when I got sick during a family holiday in the US in 2010. We’d been on a trip through rural Virginia and my mum thinks that’s where I was bitten by a tick. After that day, I just never felt the same.
Back home in Canberra, I was at the doctor’s every month with headaches, stomach ulcers or nausea. By August 2013, I’d become so fatigued I slept for 23 hours a day. I couldn’t eat, I had terrible joint pain and, despite always being a straight-A student, I couldn’t go to school.
Paediatricians presumed it was chronic fatigue and Mum said perhaps it was because I’d been such a driven student – I’d pushed myself too hard and this was my body telling me to slow down.
We had a label but no cure, then in November 2014, my GP discovered a clinic in Sydney that specialised in chronic fatigue. It was there, after blood and urine tests, that I discovered the reason for my illness: Lyme disease, probably caused by the tick bite in the US that introduced the Borrelia bacteria into my body.
Finally, I thought, I could get treatment. But it wasn’t that simple. Lyme isn’t recognised as a disease that comes from within Australia, and there can be a backlash against doctors who treat patients with Lyme-like illnesses with more than the standard few weeks of antibiotics.
We had to sign an agreement to say we understood that some medications prescribed, including the antibiotics, might have doses, treatment durations and uses that weren’t in line with standard industry practice in Australia.
If that wasn’t daunting enough, the doctor told me that when the Borrelia bacteria were hit by the antibiotics, they would release a toxin before dying. This meant my symptoms could get worse.
My parents had calculated that out of a list of 73 symptoms for Lyme disease, I had 63 of them.“You can’t get any sicker,” Mum said. Little did we know.
I started treatment in December 2014. I suffered severe nausea and such chronic light sensitivity; I had to wear sunglasses indoors.
I had seizures and hallucinations. After I got up one night and said I was going for a walk on the roof, Mum and Dad decided I could no longer be left alone.
I spent 90 per cent of my time asleep, which meant I lost track of time. One day Mum made a comment and I replied: ‘I can’t do that, I’m only 15,’ and she said, ‘Actually Grace, you’re 17.’
However, the treatment was working and by December 2015, I felt well enough to have a couple of months’ break from it.
During her research, Mum had found a treatment that was having good results with Lyme disease. It involved heating the body to 42˚C degrees [known as hyperthermia].The theory is the Borrelia bacteria has a kill-off point of 41˚C.So, in September 2016, we travelled to Malaysia to see Dr Radzi at JB Oncology. The trip cost $25,000 but we were paying up to $1500 a month for medical treatment anyway and Dr Radzi was confident he could help me.
We arrived to find five or six other Aussies having treatment for Lyme disease. Hyperthermia machines exist here but they’re only used for cancer treatment and can’t be taken above 40˚C.
I went into the treatment without any expectations; I know it doesn’t work for everyone. I was sedated and my body temperature slowly raised, kept at 42˚C for one hour and then allowed to cool naturally. It all took about 12 hours.
I also needed IV antibiotics, which was the most uncomfortable part of the process. I have no memory of the hyperthermia at all.
Afterwards, I had such bad fluid retention that I could hardly walk and my thongs didn’t fit. I think I coped with everything by just holding in my emotions.
But a week later, I went to write a school assignment and finished it in a day. Previously it would have taken three weeks. My brain fog was finally lifting.
Between treatments, we stayed with friends in Bangkok, and after the second round a month later, I went for a walk to a shopping centre in the stifling Malaysian heat. I walked so much that my body couldn’t cope with all that exercise after three-and-a-half years of inertia, and Mum had to get me a wheelchair. It was amazing and I suddenly started to have hope.
Back home in Canberra, the nausea eased, the headaches disappeared and I had no more hallucinations or seizures. The fatigue also lifted and within about two months I was around 80 per cent better. I’m still improving but I can now have a normal life. I even have a job in retail, which means I’m on my feet all day, and I’m coping fine.
The biggest problem has been depression because as I’ve got better, I’ve realised how much life and fun I’ve missed. I’ve been seeing a psychologist to help me deal with that and Mum is encouraging me to enjoy myself as much as possible and not worry about uni for a year or two. There will always be time to learn things.
Besides I’ve learnt a lot on this journey: I’ve learnt never to give up, to look for answers and that it’s OK to question doctors.”
Lyme Disease FAQ:
What is it? A tick-borne infection caused by the bacteria Borrelia burgdorferi.
Symptoms: Fever, headache, sore muscles and joints and a rash. It’s claimed that Lyme disease can become a chronic infection, though medical opinion is divided on this.
Diagnosis and treatment: Diagnosis is based on symptoms and a blood and urine test. Traditional treatment is a few weeks of antibiotics, but antibiotic treatments of up to two years are also given. The Australian Medical Association currently doesn’t recommend prolonged antibiotic use or hyperthermic treatment for Lyme disease.
The debate in Australia: No large studies have been able to prove a local existence of Borrelia-carrying ticks, but there’s debate among experts and community groups who continue to advocate for recognition of the illness.