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Eight years to find diagnosis - doctors get there too late

Lyme disease sufferer Leah Tedman and her husband Lincoln Tedman at the New Auckland nursing home, Gladstone.
Lyme disease sufferer Leah Tedman and her husband Lincoln Tedman at the New Auckland nursing home, Gladstone. Luka Kauzlaric

LYME disease has cost Leah Tedman her career, her quality of life and her chance of having children with husband Lincoln.

The courageous Gladstone couple have fought for eight years with numerous doctors to receive an accurate diagnosis and an appropriate course of treatment.

After living in a state of unendurable pain for the better half of a decade, the disease has ravaged her body and dismantled her life.

Mrs Tedman says the hardest part of living with lyme disease is the ignorance of health professionals and the Australian Government.

"People are dying and getting turned away from hospitals," she said. "The government needs to take its head out of the sand."

A representative from The Federal Australian Medical Association affirms a lack of knowledge on lyme disease.

"According to the health departments it does not exist in Australia."

In 2005 Mrs Tedman was newly married, living an active life and practising as a child protection lawyer, with dreams of starting a family.

Life as she knew it was interrupted when she came down with a splitting headache, a pain so severe it caused her to fall unconscious as she was leaving the gym.

"I was sleeping 20 hours a day and couldn't even walk from the bedroom to the kitchen," she said.

"I was rushed to hospital with a suspected brain tumour."

After consultations with seven neurologists and two cardiologists, the long and frustrating journey of misdiagnosis began.

"When they had run out of tests, some of them said I was most likely stressed," she said.

"We kept searching for answers but we were then told we were just seeking attention. I got a clear report from a psychiatrist thinking it would make the doctors listen, but I was then told I'd used my intelligence to manipulate the psychiatrist."

Symptoms of lyme disease include seizures, fainting, breathing difficulties, severe chest pains and blurred vision.

The disease is named the "Great Imitator" because the form it takes transpires differently in each new host.

The disease's bacteria, named borrelia, is shaped like a corkscrew and literally drills into every organ of the body, developing cysts.

We kept searching for answers but we were then told we were just seeking attention. I got a clear report from a psychiatrist thinking it would make the doctors listen, but I was then told I'd used my intelligence to manipulate the psychiatrist.

In Leah's case, it has damaged 11 out of 12 cranial nerves. If detected in its early stages, lyme disease is highly treatable with courses of antibiotics.

Late-stage lyme is near impossible to eradicate and remission is the only goal.

A representative from the Queensland Health Department said in a statement that to date there was no authoritative evidence of Lyme disease infections occurring in Australia.

"Australians travelling overseas in endemic regions can be infected with Lyme disease."

Mrs Tedman has never travelled outside of Australia, but has tested positive to the disease, twice.

Sufferers can contract the disease in a number of ways, most commonly through the bite of a tick.

Mrs Tedman does not recall being bitten by a tick.

Watching his wife suffer through the illness has been a difficult journey for Lincoln Tedman.

"It's taken the life we thought we would have away from us," he said.

Despite the hardship, Lincoln and Leah Tedman are thankful for the support of the staff at New Auckland Place and the wider community.

"The past eight years has been such a lonely journey for my husband and I," Leah said.

"To have such enormous support is beyond our wildest dreams. We are so grateful."

To donate funds towards research and for more information on Lyme Disease, visit karlmcmanusfoundation.org.au.

Topics:  editors picks lyme disease medicine



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