From medical mystery to costly overseas treatment for Mortlake woman

SHAKY handwriting on a birthday card seemed innocuous enough to Sheridan Jones, but it was the first sign of a rare disease that has robbed her of a previously active life.

The Mortlake woman didn’t dwell too long on her writing, putting it down to fatigue. It wasn’t until a Tasmanian holiday two months later in March 2012 that she knew something was seriously wrong.

Her right leg felt unusually heavy, like it was dragging against the will of the rest of her body. Sheridan went to see a neurologist, one of many, and a series of diagnoses failed to fully explain what was wrong with the once-healthy young woman.

The explanation turned out to be more perplexing than the symptoms. Sheridan had contracted Lyme disease, a virus not officially recognised in Australia, yet she didn’t even hold a passport at the time of contracting the rare infection.

“I remember calling up mum and saying ‘my handwriting’s messy, my handwriting’s messy,” the 26-year-old said. 

“Mum said not to worry about it but I always liked my writing to be perfect.

“I had no idea that it would lead to deteriorating my eyesight and not being able to walk. No idea. It wasn’t until my leg problem that I became really worried.”

The presence of Lyme disease in Australia has been a source of debate among medical professionals for decades, with many experts claiming there is no evidence of a domestic strain. 

The condition is transmitted via an infected tick, usually the size of a ball-point pen tip. The tick latches onto the skin and sucks the blood of a person for several days with a natural anaesthetic, usually leaving its victim unaware of its presence.

Lyme disease is officially recognised in the United States and continental Europe. An investigation is being undertaken by the nation’s chief medical officer Chris Baggoley to determine whether the condition can be transmitted within Australia. Only half a dozen Australian GPs believe domestically-contracted Lyme disease exists.

Oddly enough, Sheridan’s mother Vicki says the Lyme diagnosis from a German clinic was both a concern and a relief at the same time.

“I knew all the explanations we kept getting from the specialists didn’t stack up with the symptoms Sheridan had,” Vicki said.

“They call Lyme disease the great imitator, so it just added to the frustration.

“First they said it was an internal ear problem and that was wrong. Then we went through all the blood tests and MRI scans and CT scans, which came back saying that Sheddi had MS. That was devastating because there’s no way back when it comes to MS.

“Then months later, we were told she didn’t have MS and she had another illness called spinocerebellar ataxia. We were devastated because there’s no cure and quality of life just keeps deteriorating.”

Many days and months passed as Sheridan’s condition continued to deteriorate and specialists reassessed her condition yet again.

“Sheridan went from walking with a stick, to two sticks, to crutches and then finally a wheelchair,” Vicki said. “We went back to the specialist in April or May last year and were told that the specialists had re-examined her case and it must be adult-onset Alexander disease, which is very rare.

“Suddenly, Sheridan became very interesting (to the doctors) but not in a good way. It’s a very rare disease and if she didn’t have that, the specialists wouldn’t have an explanation. She was a mystery.”

Midway through last year, Sheridan and Vicki travelled to Western Australia for neuroplasticity treatment and a chance meeting with a Fremantle doctor gave the mother and daughter the explanation they’d been searching for during the 18-month ordeal.

Lyme disease was the answer. Several expensive blood samples were taken in Western Australia and sent to Germany, where the disease is more commonly understood.

“The problem with Lyme disease is that it’s hard to test straight away. There can be false negatives and false positives,” Vicki said.

“As soon as we got back from WA, I got on the computer. I wanted to know what is this Lyme disease and the more I read into it, the more you could see that Sheridan had a number of the symptoms that are associated with (the condition).”

Sheridan’s Lyme diagnosis was confirmed three months ago, just prior to her 26th birthday. Her once-active lifestyle has been significantly restricted, but both women are relived that finally they have some sort of explanation where once there was confusion.

“When it comes to medication, it’s quite a process,” Vicki said. “Thirty-four tablets a day and at specific times of the day which can sometimes be difficult because Sheddie has trouble swallowing.”

Diet is also a medical minefield in the Jones’ household. Sheridan has to steer clear from yeast, gluten, dairy and sugar-based products in order to improve her body’s response to the sometimes difficult treatment. The family home has had to be modified after Sheridan was forced to use a wheelchair. That was seven months ago.

But there’s a far larger challenge ahead for the young Mortlake woman. Vicki and Sheridan will have to travel to either Germany or Florida to enrol in an intensive medical clinic which specialises in treatment of Lyme disease. The expense of travelling abroad for long and expensive care has prompted a fund-raising drive through social media and a number of community events.

Prior to her illness, Sheridan had a successful career in real estate as a property manager on the Mornington Peninsula, where her father and other family members live. 

She managed about 200 properties and led an active lifestyle, including helping with cattle work on her mother’s Mortlake farm.

“I’d just love to walk again, to see properly, to drive, to speak properly — all those things,” Sheridan said. “You don’t realise how important those things are until you lose them.

“But the great thing is that it can be reversed, unlike all the other illnesses that they said I had before.

“It’s all absolutely possible.”

alex.sinnott@fairfaxmedia.com.au

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