MCS cases in Boulder, Colo

[Guest guest]

Original story at:

http://www.dailycamera.com/bdc/health_and_fitness/article/0,1713,BDC_2

431_3109696,00.htm

Carl Grimes

Healthy Habitats LLC

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Canaries in a coal mine

For people with Multiple Chemical Sensitivity, 'harmless' chemicals

can be lethal

By Marshall, Camera Staff Writer

August 16, 2004

Gunda Starkey can tell you precisely when it all started.

She remembers standing in the driveway of her suburban Chicago home

on April 12, 1989, when the mist from a lawn care truck working next

door blew in her direction. Soon, her left side went numb, her vision

grew distorted. After that, she just kept getting sicker.

For Alison , the beginning was less clear-cut. Perhaps it was

after she refinished those 19 pieces of furniture or cooked the dye

on the stove to make that braided rug.

" I opened up a couple of windows and figured I was covered, "

says. Then the migraines came, and wouldn't let up.

Spiegel, a longtime environmental activist in Boulder, traces

his illness back to a Florida golf course he visited when he was 15.

It had recently been sprayed with pesticides and when he and his

parents arrived for a post-Christmas respite, he grew violently ill.

Decades later, all three local residents say their lives have been

forever changed. As sufferers of Multiple Chemical Sensitivity — a

puzzling, highly controversial illness believed to be genetic in some

people, triggered by acute toxic exposures in others — they say they

are now ultra-sensitive to even mild, everyday chemicals like

perfumes, household cleaners or lawn fertilizer.

For Starkey, that has meant moving to Nederland, buying a house free

of carpet, fiberglass or gas heat, and limiting outings to places she

knows are pesticide-free. For Estes Park resident , it's meant

cooking from scratch and buying only organic foods.

For Spiegel, whose condition has deteriorated over the years, it

means rarely leaving his small Boulder apartment. When he does, he

wears a surgical mask and drives a car duct-taped at every crease to

keep out potentially tainted air.

" My world has become smaller and smaller, " says Spiegel, now 49.

" It's kind of like being in solitary confinement in a prison where

you are the only one who can see the bars. "

All three have spent the years since getting sick urging homeowners

and government officials to use a light hand when considering the use

of chemicals, especially pesticides and herbicides. And as the threat

of West Nile virus has put pesticide spraying on the table in many

municipalities around the country, they've been speaking up again.

" What happened to me was so needless, " says Starkey, a 48-year-old

mother of two. " People need to know this kind of thing can happen. "

But many in the medical community aren't so sure.

" There is controversy over whether or not this condition (MCS)

exists, " says Dr. Karin Pacheco, an occupational allergist with

National Jewish Medical and Research Center in Denver. " There is no

blood test or definitive test to diagnose it, and no good science to

explain it or treat it. "

Looking for answers

According to one study, published in the May issue of the American

Journal of Public Health, as many as 13 percent of Americans report

being hypersensitive to common chemical substances. Roughly 3 percent

say they have been diagnosed with MCS. As the number of toxic

chemicals in use — roughly 70,000 today according to the

Environmental Working Group — increases, so do the number of people

complaining of adverse reactions.

" It is just snowballing. You see so many people reacting to perfume,

air fresheners, diesel smoke, etc., " says , a 65-year-old

author and filmmaker who founded the Multiple Chemical Sensitivity

Foundation, a support and research group.

Just what causes some people to react violently to a perfume insert

in a magazine or that pungent " new car smell " is far from clear.

Pacheco says there is no doubt that a person can develop asthma after

a single, high-dose exposure to a chemical. And some people have

allergies to certain chemicals. But Multiple Chemical Sensitivity — a

vulnerability to a broad category of chemicals resulting in an array

of various symptoms — is different.

Some MCS sufferers report getting migraines when they smell perfume;

others feel short of breath when they pass by a newly fertilized

lawn; others feel numbness in their limbs when exposed to diesel

fuel.

" It is mostly a constellation of symptoms, " Pacheco says, adding that

some people who believe they have MCS may have psychological

problems. " In general, we don't see patients with MCS because we

don't really know how to help them. "

Dr. Kendall Gerdes, a medical doctor who founded Environmental

Medicine Associates in Denver in 1979, thinks he can.

" Most of the symptoms that we have in terms of illness are not

provable. If you say you have a stomach ache, how can I prove that?

It becomes a question of whether the physician is willing to believe

the patient. "

At Gerdes' office, signs urge visitors to skip the after-shave or

perfume the morning of their appointment and avoid wearing freshly

dry-cleaned clothes. New patients are given 20 pages of paperwork to

fill out and sit through a two-hour interview to try to trace what

could be causing their health problems.

Many come to Gerdes as a last resort, after being turned away from

other doctors who say they can't help. " The tendency is to blow it

off as a figment of their imagination, " he says.

He concedes there is little scientific data to suggest that one acute

chemical exposure can lead to a lifetime of hypersensitivity, or to

explain what causes MCS. Some believe certain people are genetically

pre-disposed to produce less glutathione, a naturally occurring

substance the body uses to cleanse itself of toxins. Others believe

one blast of strong chemicals can somehow sensitize the pathway

between the nasal cavity and the brain.

" It is still very much up for grabs as to what is going on

physiologically, " Gerdes says.

He uses a trial-and-error approach with patients, using glutathione

injections for some, medical oxygen for others. But, he says, the

most effective strategy for many is simply pinpointing what makes

them sick and avoiding it.

What the patients say

For some, that is easier said than done.

In 1997, outraged by what she calls a " hatchet job, " about MCS by ABC

News television reporter Stossel, began traveling the

country interviewing people with MCS, making videos of them, and

delivering them to congressional leaders.

The videos show ex-Marines, doctors, lawyers, and other professionals

living in virtual isolation to avoid the plethora of chemicals that

make them sick. Some live in tents. Others move to communities — one

in California, another in Snowflake, Ariz. — designed to be as

chemical-free as possible.

" This is the kind of desperation people are resorting to, "

says.

Last month, MCS made headlines when the family of Holy Cross football

coach Dan sued two contractors who had refinished the

Massachusetts college's gymnasium floor. The suit alleges the work

triggered the illness that ultimately killed . He died May 16,

10 months after he announced he had MCS. Also this summer, 18

construction workers in Oregon sued the Army for negligence after,

they say, they were exposed to sarin gas while working at a chemical

plant and subsequently developed Multiple Chemical Sensitivity. One

expert medical witness called their claims " hysteria. "

Starkey was 33, with children ages 2 and 5, and preparing to return

to graduate school to get her doctorate in psychology when her

illness began. She says she learned later that she had been exposed

to concentrated 2-4D, a toxic herbicide found in many commercially

available lawn care products. (She says she never took legal action

because she couldn't afford it).

After four years, the migraines, vision problems and fatigue

subsided, and she began to rebuild her life in Colorado.

But she still insists that visitors leave off any fragrance before

entering her home. She calls ahead before going out to shop or dine

to be sure the store hasn't been recently cleaned or exterminated. " I

try to live as normally as possible and I still find joy in life, "

she says.

Spiegel's illness has been more severe.

He says he has been unable to attend college, pursue a career or

develop a social life, because even brief exposures — such as passing

through a recently cleaned room, or sprayed field — can lay him up

for days. Like a " canary in a coal mine, " he says, he is the first

one to notice their presence.

He was politically active in the'90s, hosting University of Colorado

conferences on pesticide and herbicide alternatives, and pestering

reporters and politicians to address the issue and use a light hand

when using any chemicals.

But today, as his condition has worsened, he rarely leaves the

confines of his sparsely decorated, concrete-floor Boulder apartment.

He doesn't go to restaurants or parks. He doesn't have visitors. When

he needs groceries, he often calls ahead and has the store clerk shop

for him and bring his bags out to the window of his car.

" When I was in high school, I always wanted to be a psychologist. I

always wanted to have a family, be married, have children. That isn't

an option for me anymore. "

Changing perceptions

says despite such tragic stories, she's optimistic.

The U.S. Department of Housing and Urban Development now considers

MCS to be a disability under the law. The Social Security

Administration will consider it on a case by case basis, and the

increasing publicity about Gulf War Syndrome has led many politicians

to look closer into the long-term damage chemical exposure can cause.

Chuck Stout, executive director of Boulder County Public Health, says

he believes many of the MCS activists are misdirecting their energy

when they criticize government agencies for considering pesticide use

(in limited areas, with prior warning) to address the threat of West

Nile virus. He says homeowners use commercially available chemicals

indiscriminately and without warning neighbors all the time.

However, he says he has no doubt that chemical sensitivity exists.

" Thirty years ago, if you said to someone you were really sensitive

to perfume, they would have looked at you like you were crazy, "

says. " Now you say that, and they almost immediately say 'Oh,

I have a brother who has that, or I have a friend who has that.' "

When she went to her own family doctor 30 years ago with complaints

of migraines and joint pain, he told her it was " just age. " But when

she was diagnosed with MCS, she began to change her life, giving up

caffeine, switching out her oil furnace for electric heat and

spending her summers in a carpet-free, remote cabin in Estes Park.

Today, she looks younger than her age and still goes on regular

hikes.

" If I had believed the mindset of the doctors who said 'oh this is

just life,' I would have been in real trouble, " she says. " I'm

healthier than almost anyone around, because I can trace most of my

problem to cause and effect and do something about it. "

Contact Marshall at (303) 473-1357 or marshalll@....

RESOURCES

Rocky Mountain Environmental Health Association

(303) 271-3493

www.rmeha.org

Chemical Sensitivity Foundation

www.chemicalsensitivityfoundation.org