Lyme battle: Extreme lengths to get diagnosis, treatment
A YOUNG Ballina woman who has been suffering with Lyme disease, an illness that is not recognised in Australia, has told of the great lengths she has gone to in order to be diagnosed and treated.
Ellie-Rose Alford, 24, and her partner Jaden Bennett, 27 flew to Cyprus on Friday following a four-year-long ordeal to get answers and treatment.
When she was travelling in America four years ago, she said "my body just kind of gave up".
However Ms Alford said she believed she may have contracted the disease as a child, when her family lived in Fiji, as she recalled experiencing many of the symptoms as a child.
"When I'd gotten home from America, I was just bedridden for so long," she said.
"I didn't know what was wrong. Every time I ate something I would get sick like I couldn't digest anything. I lost a lot of weight, got really bad pains, headaches all the time."
She had to put her work, and her university studies on hold due to her illness
But no doctors were able to give her any answers.
"So many of them said 'I think you're just depressed'," Ms Alford said.
Mr Bennett said it felt as though they were "bashing our heads against a wall".
Eventually they saw a doctor in Mullumbimby who managed to get her to a point where she could get back to work and university, but her life is still crippled by the disease.
"I'm just constantly tired, constantly sick. Aches and pains keep me awake all night," she said, in addition to severe panic attacks.
"I feel like I've literally run a marathon. It's not just like I'm sleepy. It's whole body fatigue."
Finally, in June 2016, she was able to see a highly regarded doctor on the Sunshine Coast, thanks to a cancellation within his 12-month waiting list.
He conducted a variety of tests and took samples, which were then sent to the United States for testing.
The results showed she was positive for 8 bands on the Western Blot test, which, the doctor told them, was one of the strongest Lyme cases he'd seen.
"We were so lucky to see him. We were at our wits end. We could not see an end," Mr Bennett said.
"At that point is was either we found out what was wrong with me, or there was no point in living," Ms Alford said.
"It was pretty awful - People tell you it's just all in your head... so it was just amazing that we found him."
"I've never felt so much relief than the moment that someone could give me a name to put to it.
"It was a dark place not knowing there was any help, not know what was going on."
Following the positive test results, she was put on an antibiotic treatment program, but due to the damage Lyme had already done to her body, the treatment made her very unwell to the point where it was not viable to continue.
So when they heard stories of other Lyme Disease sufferers receiving great results from Ozone Therapy at the Y&C Institute of Medical Rehabilitation Clinic in Cyprus through a Facebook group of other sufferers, they thought it was worth a try.
For six days a week for six weeks she will undergo the ozone therapy at the Cyprus clinic, which she said would be "intense".
She said she was feeling a mix of emotions: "It's like excitement, because I can finally do something about it, but I'm so nervous because I don't know what to expect. But I think any step forward is good."
It's been a long ordeal to get to this point for Ms Alford.
"It's been a very expensive journey, we've had no help from the government," she said.
"It's crazy that we have to go to this extreme to get help.
"I couldn't have done it without Jaden. I don't think many people would have stuck around through what we've been through and what this disease causes. I'm very, very lucky."
While Ms Alford's journey has been undeniably rough, the pair said it was unfortunate that many other sufferers were potentially having a harder time than she.
"We speak daily online with people that are so sick who don't have the opportunity to save like we have," Mr Bennett said.
"People are selling their homes, people are committing suicide. We've literally talked to people online, only to find out a week later that they've committed suicide, just out of that feeling of isolation, the misunderstanding not only from the Australian government, but the public as well.
"And just that general discussion of 'does Lyme disease exist?' It f**king does. We're very passionate that it does.
"It's a horrible thing and people shouldn't have to go through it.
"Even if they provide funding for testing of it - if that initial diagnosis became within arm's reach, that would make life a lot easier for so many people."
Ms Alford said both the government and the community needed to be more aware of Lyme.
"What's been really difficult is when people ask me what's wrong and I tell them I've got Lyme and they say 'Oh, that doesn't exist'," she said.
"People have no idea. You can get it, people have it, people have died from it in Australia. People are sick. Saying that it doesn't exist to someone that is already struggling, it's just the worst thing.
"There needs to be more awareness and support.
"Just for people to know in the community: There are people suffering and that anything that they can say or do to help, it makes a big difference."
Once Ms Alford back from the treatment, she said her aim is to help others who have been suffering in the same situation she has been in.