How one woman's life was turned upside down by mold

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God I sympathize to that. I hate my bubble.

Janet

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How one woman's life was turned upside down by mold

polis Capital - polis,MD

By WENDI WINTERS, For The Capital

http://www.hometownannapolis.com/cgi-bin/read/2007/03_11-06/LIF

Carol West is a little bit like the cartoon character that is always

followed by a dark cloud. The past 10 years or so, life has been a

big dark cloud with intermittent periods of sunny skies.

Many people hate the smell of cigarette smoke, perfume, hairspray or

microwaved popcorn. But, it doesn't make them sick.

Just about everything makes Ms. West sick. She describes it as

having a spike driven through her head.

Her hypersensitivity may be a rare illness, or it may be a warning

sign for all humans.

" She has aggressively sought medical help from many specialists, and

I have accompanied her to several of her numerous doctor's

appointments, " says Naval Academy physics professor Elise

Albert. " It has been heartbreaking to see her health collapse and to

find that modern medicine just cannot cure her.

" Even the simplest things that I take for granted, breathing,

eating, sleeping, being able to leave the house, ride in a car, and

interact with people, range from difficult to impossible for Carol.

She is in constant pain and often plunges into despair. "

Life in a bubble

Ms. West lives in a tiny studio apartment in Harwood. It is a

bubble, isolated from the world outside. The apartment is

scrupulously clear of mold. The windows are sealed shut and the air

is filtered by a special ventilation system. The wall paint is

chemical free and the floors are made of bamboo.

The few visitors she receives cannot wear any scented lotions or

perfumes. Most importantly, they may not wear clothing that has been

laundered with dryer sheets.

If someone walks in with a strong chemical odor or tracks in some

sort of mold, Ms. West might wind up bedridden for days, unable to

walk, think clearly or breathe deeply. She is highly sensitive to

chemicals and molds. Her illness has rendered her unable to work.

" Chemical sensitivity is a wide spectrum and Carol is one of the

most extreme, " says Dr. Alan R. Vinitsky of Gaithersburg. " She has a

genetic pre-disposition to odor sensitivity when exposed to an odor.

The olfactory nerve, smell, is the most primitive organ. It serves

as a warning or threat to survival, triggering the 'fright or

flight' response - an autonomic nervous system response. "

" Does she have psychotic problems? " he asks rhetorically. " The

disease looks and acts like anxiety. There is a multiple symptom

involvement with no other explanation for it. It has symptoms like

Lyme disease, fibromyalgia and chronic fatigue. She's wound up with

so much debilitation she can't perform or compose because she's too

foggy and can't coordinate her reflexes. When people are severely

debilitated, they wind up living in a bubble. We seek to get people

out of the bubble and operating normally. "

Struggle to survive

Most friends and family have abandoned Ms. West. Her mood swings

would not get her named " Miss Congeniality. " She survives through

the generosity of a handful of supporters, including one family that

provides the apartment she lives in in exchange for caretaker

services.

Ms. West is hoping to receive disability benefits from Social

Security, which approves them on a case-by-case basis for

environmental illnesses such as hers. Meanwhile, medical specialists

in her illness are scarce, expensive and booked months in advance.

What little money she has left is running out.

Ms. West used to make a good living composing New Age music. She was

well known in the Chesapeake Bay area as well as on the national

music scene. For a decade she wrote background music for a popular,

prime time TV series, and spent 3 years writing music for PBS. Life

was going swell until she bought a house in 2000.

" When I'd walk across the carpets of my new home, my toes would turn

black, " she says.

She thought the dark carpet was crocking - rubbing off its dye onto

her feet. Instead, when she peeled the carpet back on a hunch, she

discovered it was completely covered with black mold. The house had

been flooded before she owned it, and it had a humid interior. Mold

was everywhere. She was getting sick all the time.

" I threw everything I had at it. I was in bleach and cleaning

chemicals 24 / 7 for six months, " she recalls.

With help from friends, she tore up carpets and sub-flooring,

replaced moldy drywall, repainted everything and redid the kitchen.

Despite this, she was getting sicker.

Time to move

She sold the house and moved into a cottage in Epping Forest. Her

illness continued. To her horror, she discovered it had been a

chicken coop at one point, and the farmer-owner also used the space

to concoct chemical nerve agents to kill vermin and pesticides.

" It would get so bad in there, I had to pitch a tent and sleep

outside, " she says.

In a rental with new carpeting, her sensitivity to chemicals

increased.

" I couldn't be around gasoline or asphalt. I used a magic marker and

nearly passed out, " she says. " I couldn't go to exercise class

anymore because of the perfume on my classmates. My system collapsed

and I no longer had normal reactions to chemicals. "

When she discovered mold in the house, she moved out. The landlord

sued and was awarded $30,000 in damages. Ms. West filed for

bankruptcy.

" I'll go into an area that I think is clear and something starts to

bug me, " she says. " It sensitizes me and triggers reactions. I start

smelling things beyond the normal threshold. The smells start making

me sick. Even natural stuff like flowers, hay, lilies, narcissus -

they make me sick. "

She is not alone. According to the Centers for Disease Control and

Prevention Web site, people with asthma, allergies or other

breathing conditions may be more sensitive to mold. The same is true

for people with HIV, cancer patients on chemotherapy and people who

have received an organ transplant.

Search for answers

" It's biochemical, it's not psychological, " says Dr.

Marinkovich of Redwood City, Calif., who is currently treating Ms.

West with anti-fungal drugs that seem to have a positive effect. " I

think it's a lack of certain enzymes our bodies used for degrading

chemical that enter. If you lose that ability, chemicals get into

the body and interfere with its functions. It's a breakdown of

protective enzymes. "

He offered a theory that fungi and molds produce toxins that block a

body's ability to deal with some chemical molecules.

" There is never going to be a double-blind study, because we're not

going to expose people to mold and let them die, " he says. " There's

no vested interest in proving mold hurts people. I'm concerned about

that. "

He points out a report published by the American College of

Environmental Medicine - and used in scores of litigation cases to

support denying financial relief to people sickened by mold. It

states: " Current scientific evidence does not support the

proposition that human health has been adversely affected by inhaled

mycotoxins in the home, school, or office environment. "

The report's objectivity was sharply questioned in an investigative

article in the Jan. 9 issue of The Wall Street Journal, which

pointed out the medical report's authors had a long, lucrative

history of employment as court experts for the defense in mold-

related lawsuits.

Les Lentz, owner of LSP Studio in Wye Mills, has known Ms. West for

18 years and has witnessed the changes to her longtime friend.

" She was doing big films, writing scores, working for FOX and PBS

and holding recording sessions with the best people in the world, "

she says. " She fed you well, paid you well and you worked with the

top guys, national-level players. She was so tight and on top of her

game in every aspect. Her sessions were always top level. "

" I don't think she's capable of doing anything now. Such a talent!

What a motivating presence, but she can't do it anymore. "

---

Wendi Winters is a freelance writer living on the Broadneck

Peninsula.