SITTING in a clinic in Bali, Lyme disease sufferer Troy Stever watched the blood flow out of his body through a plastic tube almost every day for 10 weeks.
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The colour of his blood was black – but after it had been through the cleansing dialysis machine it flowed back into him a healthy cherry red.
The treatment, though gruelling in itself, brought Mr Stever precious days where he didn’t vomit, urinate up to ten times in an hour or wake up every night crying in pain.
The Lyme disease sufferer has now been back home in Tuross Head for eight weeks and wanted to check in with the community that raised the money to get him to Bali.
There was a huge outpouring of support from the Narooma community with a big fundraising auction held at the local bowling club earlier this year to get Troy to Bali.
Read our coverage of the fundraiser:
He said he is still “humbled” by the goodwill that helped raise the $30,000 he needed for the blood cleansing treatment, which is not available to him in Australia.
Unable to afford to take his family, wife Melissa and children Kaila, Nathan and Deitter he relied heavily on the kindness of the staff at the $30 a night hotel he stayed at outside of Kuta.
They became his second family for the duration of his stay, assisting him when he was ill.
He wanted the community to know the treatment has made a huge difference to his general health, at least in the short term, and he is now planning another trip.
“Before I went to Bali I was a walking pharmacy, I was on so much medication - blood pressure tablets, blood thinners, antibiotics,” he said.
“It is helping massively.”
The treatment itself was no walk in the park.
“The first three weeks my body went into shock every time they started treatment and I couldn’t make the 90 minutes. So we would have to start again. We just kept going and keep going.”
He said the side of his head was swollen from bacterial infection and during the early stages of the treatment he was bleeding from the ears.
But the positive effects soon became apparent, and he wanted all those who donated money to know how much improvement he felt from the treatment.
“The community was amazing. There were donation tins all over the place. There’s more than 1000 people I need to thank.”
Sadly, he is now feeling his “batteries going flat” again and is planning another fortnight treatment in Bali.
He said he wishes he could tell all the people who have supported him that he is cured.
“I know everyone was hoping that I get the treatment and then I’m fixed. It breaks my heart to tell them I’m not.
“While I was very thankful for all the fundraising I was never really comfortable with it. There are people out there who are so much worse off than me.”
“I have to go back to Bali, I’ve got no other choice. My hands and feet are cold and my spine is starting to swell up. I wake up in pain – I can’t sleep for more than an hour. The kindness of the community continues – while Mr Stever was in Bali, his local fire-wood supplier dropped off two loads of wood for his family.
“It’s not a pleasant way to live, it makes you angry. I’m very lucky I’ve got a thoughtful and understanding family. I feel guilty leaving them, but I have no choice. I do the best I can.”
Lyme disease a double-edged sword
HAVING his complex illness labelled as Lyme disease is a double-edged sword for Troy Stever, who has suffered with the condition for 16 years.
On the one hand the high profile of the condition attracts attention for research and funding, on the other hand it puts up barriers.
Federal and state health departments have maintained for the past 20 years that there is no evidence of Lyme disease in Australia.
But there is debate in the community and among some clinicians regarding the existence of the disease.
As a result, the federal government has recently established a clinical advisory committee to investigate evidence of the disease.
The report is likely to be completed by the end of this year.
A spokesman for the federal Department of Health and Ageing said there was currently no authoritative evidence Lyme disease can be contracted in Australia.
The Federal Government has just announced it is investigating whether Lyme disease is causing illness in Australians.
Lyme disease is spread by ticks and is the most common tick-borne disease in North America and Europe.
If diagnosed early, it can be treated effectively with antibiotics.
Read previous coverage of Troy's treatment: