This is an article from a Canadian newspaper that talks about prolotherapy
treatment for RSD being done in Chicago. Have any of you ever heard of it, had
it done or know anything about it?
RSD friends
Dori




NEWS STORY
'Alive and rotting'
New West woman with painful disease can't get costly U.S. treatment

Don Harrison
The Province


CREDIT: Ric Ernst, The Province

Lynn Lorette tries to cope with her pain as friend Taya Smith (left)
drops by to help her with her daily needs.

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Lynn Lorette's muscles and bones are being eaten away.

The ravages of the rare disease called reflex sympathetic dystrophy
are so complete that in about six weeks the 32-year-old New
Westminster woman will lose mobility.

The disease will enter her spine and she will become an invalid.

There is a treatment, called prolotherapy, that in all likelihood
would give the Nova Scotia native back her life. The Canadian
Association of Orthopedic Medicine praises prolotherapy, as does her
Vancouver specialist.

But the B.C. government won't pay Caring Medical of Chicago's $35,000
fee, despite Herculean efforts by Lorette to help herself.

"I've even volunteered to pay the money back to the government," said
Lorette from her bed in her one-room rental suite. "I have been
proactive trying to help myself. I don't want to have to beg, but if
I don't get treatment, my legs will literally rot off."

Lorette's Vancouver physical medicine specialist, Dr. Cecil Hershler,
is also sure she should be receiving U.S. treatment.

"Dr. Ross Hauser's prolotherapy offers the only hope for a
resolution . . . given the circumstances, history and damage,"
Hershler said.

Today, Lorette can barely get out of bed, but two years ago, she was
a perky cruise-ship worker.

Now she's losing use of her left hand.

Her thighs are swollen, her calves and feet thinning and dark, a sign
the disease is restricting blood flow.

She also has a sack of fluid in her abdomen, like a fanny pack. A
visiting care aide helps her bathe.

"Sometimes the burning pain is so bad . . . ," she dissolves into
tears.

The worst is yet to come: In a few weeks, the disease will reach
Stage 3 and hope will be lost.

"Lynn has horrible, disabling pain in her neck, shoulders, upper
back, lower back as well as down her extremities," Caring Medical's
Hauser wrote in a letter to Victoria.

"Failure to get care at Caring Medical would almost ensure her a life
with chronic disabling pain."

With 10,000 patients treated over the past 48 years by prolotherapy --
in which growth hormones are injected into tissues -- Hauser is one
of a handful of experts in reflex sympathetic dystrophy.

Lorette cashed in her retirement savings and spent $7,000 at Caring
Medical last year. The headaches she'd had for two years vanished.

But the money ran out and her $800 monthly disability cheque doesn't
go far.

She's raised enough for airfare to Chicago and accommodation, but two
dozen charitable agencies turned her down, saying they aid children
or seniors.

"Isn't it my God-given right to be well if I can be?" Lorette pleads.

Health Services Minister Colin Hansen told Lorette he couldn't help
her and he won't talk to The Province about why.

His spokeswoman Tara Wilson dismissed Caring Medical's experience and
professional certification -- from the American equivalent of
Canada's Royal College of Physicians and Surgeons -- legitimizing its
skill at treating the condition.

"MSP does not fund prolotherapy," she said. "It's not a recognized
therapy."

B.C. also says no other province pays for prolotherapy.

But Hershler says the Chicago clinic is highly qualified to help
Lorette.

"Lynn will be at an accredited facility," the doctor added. "This
treatment is necessary to avoid possible irreversible soft tissue
damage."

As for costs of not financing her treatment, the Reflex Sympathetic
Dystrophy Syndrome Association of America said workers' compensation
firms estimate costs of $500,000 to $1 million US to look after
patients who've hit Stage 3.

"I've notarized my will," Lorette said. "I'd rather be a dead rot,
than be alive and rotting."

n The numbers of cases in North America is unknown because, as the
syndrome's association says, "there isn't a gold standard test" to
confirm every case.

The U.S. government estimates its country has 200,000 cases, but the
patients' group believes there could be up to 1.4 million.

In Canada, estimated numbers come from using this country's one-ninth
population ratio to the States, putting our cases at between 25,000
and 160,000.

donharrison@...

© Copyright 2003 The Province






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