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Manitoban's odyssey leads him to a Vancouver MD

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A former Manitoba deputy minister of health says he thinks Canadian doctors are "radically under-diagnosing" the incidence of Lyme disease.

Tom Carson, who retired from government in 2002, believes he contracted the disease while clearing his cottage property at Lake of the Woods for a septic field that same year. He doesn't recall getting a tick bite.

Carson's story is instructive and a little unnerving.

He is among the estimated 20 per cent or more of Lyme disease patients who do not develop the classic symptoms. There was no sign of a tick bite, nor did he detect the bull's-eye rash -- or any other rash for that matter -- that usually manifests itself in the disease's earliest stage, when it can be treated easily.

Despite his medical connections, he bounced around from specialist to specialist for eight years before he was diagnosed -- in Vancouver -- in late 2010.

He said he can sympathize with folks who are told by some doctors that they are just imagining the disease.

"My sense is that they (physicians) don't know how to see the symptoms (after the disease's initial stage). They don't know how to interpret the symptoms, and they get taken into other directions by the symptoms."

Carson served as a deputy minister in the Manitoba civil service for 14 years, the last two as the health deputy minister. It was while writing a paper for the Health Department shortly after his retirement that his right wrist began to swell. It remained swollen for years.

At first he thought the problem was some type of repetitive-strain injury. He underwent a battery of tests for arthritis. Nothing showed up. After four years, X-rays showed damage to his tendons. He had surgery in 2007, but still, nobody could determine the cause of his problem. At the same time, he had started to lose dexterity in his left wrist. Then he noticed he was losing strength and muscle tone in his arms.

He saw many specialists, including one who concluded he had ALS, also known as Lou Gehrig's disease. Two specialists later, that diagnosis was ruled out, but not before one neurologist told the former deputy minister, who carefully tracked his symptoms, that he must be mistaken as to when they first became noticeable.

Finally, in November, a friend urged Carson to check out a general practitioner in Vancouver who does a lot of work with chronic inflammatory diseases. Carson told him the whole story of his symptoms dating back to the initial wrist swelling and was told he had "a classic case of Lyme disease."

The Vancouver GP, in co-operation with Carson's Winnipeg doctor, put him onto a controversial treatment known as the Marshall Protocol. It involves taking an anti-inflammatory drug and reducing intake of Vitamin D. The idea is to reduce chronic inflammation in order to get the body's immune system functioning properly so it can deal with the Lyme bacteria.

Since starting the treatment plan, Carson said the disease's progression has stopped. But he has "not had a major reversal yet."

His doctor said it could take four or five years to recover much of the strength and dexterity he lost in his arms.

larry.kusch@freepress.mb.ca

Republished from the Winnipeg Free Press print edition September 10, 2011 J5

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