LISA Egan is in constant chronic pain.
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The 24-year-old said she had been sick for so long, she didn’t know what to do anymore.
“I don’t have a day without pain,” she said.
In June 2016, Lisa was told she had Lyme disease, even though she had never travelled outside of Australia.
She said she had difficulty finding help, as Lyme disease was not recognised in Australia. Instead, a ‘Lyme-like illness’ has been acknowledged.
“Doctors say to me my case is rare, and too hard to treat, but they have tried to help,” Lisa said.
“What hope have you got if people can’t help you?”
The history of her health is short, but intense.
“It started in 2010, I had flu-like symptoms like sore throat, swollen glands, aches, sore joints and fatigue, and I was sick a lot,” Lisa said.
“I was constantly seeing GPs who said there was nothing wrong with me, so I thought nothing of it.”
In 2012, she was rushed to Liverpool Hospital where multiple blood clots (known as PEs) were found on her lungs, and she had third-degree heart block, pneumonia, pleurisy, fluid retention, chest pain, sweating and difficulty breathing.
“They said if I had arrived at the hospital 10 minutes later, I would have died,” Lisa said.
She struggled to maintain her health, but managed to wean herself off medications and used diet and exercise to keep herself healthy.
But in August, 2015, her health went downhill.
“I was running on the treadmill and I hurt my hip,” Lisa said.
“I got a scan after it wasn’t getting better, and was diagnosed with Bursitis, which is common for runners.
“I ended up having three cortisone injections into my left hip but with no relief.”
Since this time, Lisa has seen physiotherapists, oestotherapists, chiropractors and acupuncturists.
“It has come to the stage where I can’t sit down, and cannot lie on my back,” Lisa said.
Lisa saw a rheumatologist, who diagnosed her with fibromyalgia. The medication made her extremely sick and did not help her pain. Seeking a second opinion, Lisa said other doctors told her she does not have fibromyalgia.
In June 2016, Lisa saw Natalia at Health Space, Potts Point, to receive a kinesiology session.
She was then referred to the biochemist at Health Space, Petra Behuliak.
This was when Lisa was told she had Lyme disease.
It has been recommended that Lisa go to Germany to receive whole body hyperthermia treatment, which costs about $40,000.
“I’m 24-years-old, I cannot afford this,” she said.
“I feel like I’m wasting my time, I’m getting no where.
“I can’t function, I have chronic fatigue, poor memory, my concentration is terrible, I get headaches and migraines, rashes, poor circulation, chest pain, depression – the list is endless.”
Lyme Disease Association of Australia vice president Jennifer Sherer said while the government and some health officials recognised that Lyme disease was in Australia, they didn’t believe the disease could be locally acquired from Australian ticks.
“The main reason for this is there isn’t enough evidence that satisfies certain criteria,” she said.
“It has been dubbed a ‘Lyme-like illness’ to keep everything on the same playing field.”
Ms Sherer said people with the illness were “chronically ill” and were often denied treatment.
“Something needs to be done for patients now, we can’t wait for the research to catch up,” she said.
“An absence of research doesn’t mean nothing is wrong.
“When you’re sick and need to be proactive about your disease – which you don’t know a lot about – it’s very hard.”
It takes between three and eight years for a person to be diagnosed with Lyme disease or a Lyme-like illness, as the toxin is not always active in the blood.
Ms Sherer said many people with the illness were “left to their own devices”.
“They have a chronic illness and they have to help themselves, they have to fight to get treatment,” she said.
“Some people have even been put into psychiatric wards because they’re told it’s in their heads.”
Finding help for Lyme disease, or a Lyme-like illness, can be difficult as doctors who specialise in the area are rare and very expensive.
An inquiry into the illness was organised by the last Senate, but fell apart with the double dissolution.
Ms Sherer said the association had made contact with the new senators, and hoped to reinstate the inquiry by mid-September.
A spokesperson from the Department of Health said there was currently “no conclusive evidence of a causative agent in Australia [for Lyme disease], leading to problems with the accurate diagnosis of Lyme disease or an Australia Lyme disease-like syndrome”.
“The Department of Health is working with pathology laboratories domestically and internationally to resolve the discordance in diagnostic tests which remains a problem for Australians seeking a diagnosis of their illness,” the spokesperson said.
“It is important to have confidence in the testing process so that patients receive optimal treatment related to the cause of their underlying condition.”
Meanwhile, people like Lisa are left in limbo.
“I just hope someone will read this and be able to help me,” she said.
Lisa can be contacted on egan855@hotmail.com. Her GoFundMe page is https://www.gofundme.com/2nubkyc.
More information on Lyme disease, visit http://www.health.gov.au/lyme-disease and http://www.lymedisease.org.au/.