“The last time I saw my specialist in Queensland he said: ‘If this treatment doesn’t work you’ll have MS in five years and will be dead at 30’.”
Lucy Alexander is currently in the fight of her life against Lyme disease.
She was sitting in the lounge room of her Adelaide home as she spoke in detail about her deadly diagnosis.
The trouble is the disease she is battling is currently not recognised as existing in ticks in Australia.
Lucy, however, firmly believes she was infected while handling local wildlife.
Seizures, migraines, nausea
But alcoholic or caffeinated drinks instantly trigger seizures and paralysis to parts of her body. Too much sugar can also trigger seizures.
Anything with dairy or gluten results in migraines and severe nausea.
Her nightly routine involves taking 50 different types of medication to try to control the symptoms of her condition.
“If I go off them I am bedridden — but they don’t make me feel any better,” she said.
Tormented teenage years
Lucy’s health battle began when she was a teenager.
“It started with migraines and fainting every day,” Lucy recalled.
Sometimes the crippling migraines would last up to three weeks and usually end with her being admitted to hospital.
“Then chronic pain and fatigue set in,” she said.
“There were days when I got to school and went and crouched in the bathroom and had a nap in the toilet stall. I couldn’t keep my eyes open and didn’t know why.”
The seizures that followed caused short-term memory loss.
Doctors diagnosed Lucy with everything from chronic fatigue syndrome, to growing pains, to hallucinations.
Then, two years ago, Lucy’s GP encouraged her to send a blood sample to the Californian laboratory Igenix, which specialises in detecting Lyme and other tick-related diseases.
When results came back to Dr Nijole Lloyd, Lucy was formally diagnosed with Lyme disease.
But Lucy had never travelled overseas to areas where Lyme-carrying ticks are found.
Lucy said she believes she contracted to the disease while helping a relative care for injured wildlife.
“I was diagnosed with a disease that Australia doesn’t recognise; there was no treatment that I knew of and I knew you could die within 10 years from it,” she said.
A statement from Australia’s chief medical officer, Brendan Murphy, released by the Commonwealth Government’s Department of Health, says “to date, the organism that causes Lyme disease has not been found in Australia”.
Researchers in October 2016, meanwhile, said Australian patients claiming to have Lyme disease symptoms who had not travelled overseas were responding to “false positives”.
Because of this, most of the $150 to $200 weekly bill for the cocktail of medication Lucy takes — as well the $6,000 she spends annually in experimental treatments — are not covered by Medicare.
“There are so many people with this illness … [but] hospitals reject them, specialists think they are crazy and they have nowhere to go,” Lucy said.
Overwhelmed by help from others
Lucy said she had basically exhausted her own finances and those of her family’s on treatment.
She recently resorted to crowdfunding to help ease the financial burden.
“I have been so surprised by how much my family is willing to sacrifice — and strangers have been willing to give thousands of dollars,” she said.
“I can’t express how much that means.
“I wish I could repay them, but if I could I wouldn’t be in this position in the first place.”
Lucy’s first crowdfunding attempt last year saw her raise $8,250; this money went towards three months of intensive treatment.
She has just launched a second campaign and hopes to raise $80,000 for ongoing treatment.
“Because I have had this disease for 11 years, it’s going to take probably years of this treatment to achieve an 80 per cent bacteria reduction,” she said.
An uncertain future
Lucy hopes that, combined with her crowdfunding efforts, she will be able to save enough money to travel to Malaysia before the end of the financial year for another round of experimental treatment.
“They do a week of intravenous vitamins, hyperthermia and a hyperbaric chamber,” she said.
“With that treatment I probably won’t have to worry about another round for at least a year.”
Ms Alexander said if the Federal Government recognised that Lyme disease does exist in Australia, her life would be much easier.
“Maybe that sounds really naive, but this is the hardest thing I have ever had to go through and [recognition] would be amazing,” she said.