Sunday, January 21, 2007

Patient delusion -- or medical confusion?

Patient delusion -- or medical confusion?

When Anet Greenley got sick four years ago, what upset her the most wasn't the continual nosebleeds, the numbness in her limbs, or even the fact that her stool had turned green. What really bothered her was the fact that nobody would take her seriously.

"My doctors all told me I was stressed out, that it was all in my head, that I was having panic attacks that upset my stomach," says the 38-year-old Ottawa native. "Even some of my family told me it was in my head.'"

But Ms. Greenley knew she was genuinely sick -- so sick that she had to quit the University of London and fly home from England. And several months later, after going from doctor to doctor, she finally found out she was right: She has multiple chemical sensitivity (MCS), a condition that makes her extremely sensitive, you could say allergic, to synthetic chemicals.

These days, Ms. Greenley can control her symptoms, as long as she avoids everything she reacts to: cologne, dryer sheets and car exhaust are just three irritants on a very long list. Other than that, though, there's nothing much she can do. The syndrome is so new that doctors still don't know what causes it -- or how to treat it.
And Ms. Greenley is not alone. According to a Statistics Canada study released last week, more than one million Canadians are suffering from illnesses that are stumping their doctors.

The most commonly reported conditions are MCS, chronic fatigue syndrome and fibromyalgia (all of which affect twice as many women as men). Reports of a host of other mysterious diseases -- such as Morgellons and vulvodynia -- also seem to be increasing in both the United States and Canada.

What these disparate illnesses have in common is patients' struggle not only to find a cure for baffling symptoms, but to establish legitimacy for their complaints. The causes of these conditions remain controversial -- and many doctors continue to label symptoms as delusional.

Some of the skepticism patients encounter is understandable -- especially when they claim to have something as bizarre as Morgellons disease. People who suffer from this affliction say they are plagued by constant itching, burning and crawling sensations, open sores that won't heal, and strange "fibres" (black, white, blue and red) erupting from their skin.

Although at least 4,000 people have now registered with the Morgellons Research Foundation in the United States -- including former Blue Jays pitcher Billy Koch -- the vast majority of doctors do not consider Morgellons disease to be anything more than a textbook example of "delusions of parasitosis" or DOP, a psychiatric condition.

This is what Stan Skoumal's dermatologist clearly thought was his problem. After waiting seven weeks for an appointment, the 54-year-old from Victoria says his symptoms were simply dismissed.

"The whole visit took 11 minutes, I received a seven-minute lecture about the wonders of the mind, I was given a psychotropic medication, and then I was out of there," he says. "The man never came any closer to me than about 10 feet."

Frustrated, Mr. Skoumal launched a lobby and support group called the Morgellons Society of Canada last fall. He avoids medical doctors and treats himself with baths, diets and exercise. And he combs blogs and chat rooms, where suffers have posted hundreds of amateur microphotographs of their skin showing their "fibres" and the parasites they believe have infected them.

Still, some medical professionals believe that such attempts -- while addressing patients' helplessness and anger at the reaction of conventional health practitioners -- may do more harm than good.

"Interpreting things under microscopes are fraught with danger -- you'll find what you're looking for," Dr. Jay Keystone says. "Lie on your back and look at the clouds. It's a good analogy."

Dr. Keystone, who practises with the tropical medicine unit at Toronto General Hospital, has studied parasitic diseases for more than 30 years and has treated many patients with DOP, and a small number of whom claim to have Morgellons. "From time to time, I do see what they're looking at, I do see the occasional 'fibre,' " he says.

He adds that, in response to stress, the nervous system releases chemicals that can cause some strange symptoms.

But he also says all the lab tests have shown absolutely no evidence of parasites. He is certain that most patients have open sores because they have itched and scratched themselves raw.

Not all doctors agree. Dr. Vitaly Citovsky, a professor of biochemistry and cell biology at the State University of New York, says he found a gene from agrobacterium -- a germ that normally infects plants -- in skin samples from two Morgellons patients.

This is just an idea, though -- two samples do not constitute proof that the condition is not psychosomatic. And it's a long way from an idea to a treatment. All of which means patients may suffer for years, even decades, waiting for answers.

Even when a mysterious syndrome has been concretely established, the stigma of earlier psychosomatic diagnoses can remain, affecting patient care.

For example, roughly 15 per cent of women experience vulvodynia -- debilitating, sometimes crippling, genital pain caused by muscular and nervous dysfunction. Mainstream medicine has recently recognized vulvodynia as a real disease, but doctors continue to tell women that their condition is "all in their heads."

"Doctors tend to go through their routines, and if their routines don't give them an answer, then they say it's all in your head," says Dr. Kaye Kilburn, who studies MCS at the University of Southern California. "It is shoddiness, and it is widespread. But it doesn't mean the physicians who are in the minority aren't right."

Laurie Clark can attest to this. When the 53-year-old from Regina starting having constant burning pain on her vulva, she was told that she had emotional problems. "So I went to a psychiatrist," she says, "and even though I wasn't depressed at first, you start to become depressed because you go from doctor to doctor and nobody can tell you what's wrong."

Michelle Living was luckier. When the 24-year-old's pain started two years ago, just before she got married and moved to Victoria, she got a diagnosis fairly quickly -- in seven months. Unfortunately, her dermatologist did not tell her about any treatments.

On her own, Ms. Living discovered anesthetic creams and chemical "nerve blocks" that could help her. Before then, she says: "I was depressed, hopeless, I didn't think there was anything I could do."

None of these treatments have universal success, however. And, although vulvodynia affects six million women in the U.S., there have been only eight studies funded by the National Institutes of Health.

Indeed, researchers who study unexplained syndromes all complain of the same thing -- that there is simply not enough money for research. Funds tend to be earmarked for high-profile, fatal diseases such as cancer and heart disease.

As for the million-plus Canadians who suffer from MCS and chronic fatigue -- conditions that have been dubbed "yuppie flu" and "20th century syndrome"?

Studies are emerging to explain the cellular and biochemical causes of these strange disorders. For example, researchers affiliated with the University of Toronto are looking into enzymes that they say are slightly different in people with MCS, preventing them from detoxifying foreign chemicals properly.

But effective treatments are still a long way off. Ms. Greenley, for one, doesn't think she will ever be cured -- so she and her husband have installed charcoal filters on the air vents in their new house and purchased a $4,000 hypoallergenic mattress.

"When you have MCS, it is very easy for people to think you're a paranoid person," she says. "I'm not. I'm just trying to protect myself and make it so I can have a normal life."


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