Coal Point's Peter Robson has been through "hellish pain" after contracting Ross River fever from a mosquito bite.
Mr Robson has been suffering the effects of the infection for four months.
"It's been life-changing," Mr Robson said.
The pain would wake him at 3am, with "a feeling like someone had smashed my bones with a hammer".
"When it first started, it began in my shoulder and felt like I had separated a tendon from the bone. It was that intense," he said. "It started attacking random joints every second day or so. It would move to my knees, feet and wrists. I had extreme swelling. My knee puffed up. On a pain level, this was a 9 out of 10. It's crippling."
He had broken arms growing up, but said "this pushed me to the absolute threshold of my pain levels, to the point where you can't sleep with it".
He has since developed rheumatoid arthritis symptoms. Blood tests have shown he has high inflammation levels.
"It's been a real challenge convincing doctors that the pain and disability are legitimate," he said. "I have to use a walking stick most days. I walk with a limp every day.
"I can't walk the dog or do regular exercise. I can't use the gym. Fortunately I'm working from home."
Some patients had been known to take three to 12 months off work to cope with the illness. Mr Robson said doctors misunderstand the disease and prescribe panadol or ibuprofen.
"When you're in heightened levels of pain, you need heightened levels of painkillers," he said.
"I was looking for whatever relief I could get to hang on to my mortgage and support my family. That said, I've now got the pain under control with prednisone."
Mr Robson, who is part of a Ross River Virus Sufferers Help Group on Facebook, said "the medical fraternity don't really understand it or know how to treat it".
His wife was diagnosed with Ross River fever a few years ago, so he suspected he had the virus.
"I recognised that my symptoms were almost identical to hers," he said.
He asked a GP to test for the virus and it came back positive.
"He said he wouldn't have tested for it otherwise. I think it gets undetected a lot of the time."
Mr Robson lives in a bushy area near the lake.
"We've got a lot of mosquitoes here," he said, adding he is vigilant with insect spray. "We had a huge cluster of 500 to 1000 mosquitoes on the ceiling one day."
He believes they "blew in on a big westerly".
That was a few weeks before he had symptoms.
He was diagnosed in mid-November. NSW Health data shows the Hunter had a spike in Ross River fever cases around that time.
The viral infection, caused by a mosquito bite, can produce symptoms of fever, chills, headache, fatigue, muscle and joint pains, stiffness, swelling and rash.
"Many people with Ross River virus infection do not have symptoms," NSW Health's factsheet states. "When symptoms occur, they usually develop about 7 to 10 days after being bitten by an infected mosquito."
Some people will recover after a few weeks, but others may have symptoms such as joint pain and tiredness for many months, the fact sheet states.
Griffith University Associate Professor Lara Herrero said it's not known what causes symptoms to last for months.
Chronic symptoms could be a post-viral condition, like long COVID or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Or, the virus could remain in the body and replicate at very low levels.
"We don't exactly know, as it's hard to get human samples to see if the virus can be detected," Associate Professor Herrero, a virologist and infectious disease expert, said. "Currently, the theory is that it's more likely a post-viral syndrome. There is sufficient evidence for that.
"However we can not rule out low levels of virus or virus antigen still in the joint."
She said long COVID and post-Ross River fever illness are distinct, but "share many similarities in presentation, including ongoing extreme fatigue and body pains".
"We currently do not know enough about what causes some people to develop these syndromes, or how best to treat them," she said.
This highlighted the "critical need to study post-viral syndromes in general".
Associate Professor Herrero, who has experienced a long-term Ross River fever illness, conducted research on a drug to treat the illness.
The phase 2 human clinical trials of Pentosan Polysulfate Sodium (PPS) passed both safety and efficacy measures in 2019. At a three-month follow-up, 73 per cent of participants treated with PPS showed "near remission of symptoms in contrast to those participants who were administered with a placebo (14.3 per cent)".
The semi-synthetic drug is manufactured from the wood chips of European beech trees, drug company Paradigm Biopharmaceuticals states. It's been found to have "anti-inflammatory and tissue regenerative properties, as well as mild anti-thrombotic activity".
The drug is still in development, but some patients had previously accessed it through the "TGA special access scheme with GP support", Associate Professor Herrero said.
Mr Robson said he was "desperately trying to get access to PPS" but that "GPs won't entertain the idea because they don't know what it is".
He considered flying to see a doctor in South Australia who prescribed the drug, but patients would have "no indemnity, as it was considered an experimental treatment".
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