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Lyme Disease symptoms vary from person to person. (lymes disease lyme's disease lime disease limes disease)
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How one woman's life was turned upside down by mold
By WENDI WINTERS, For The Capital
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. Vincent 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."
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Wendi Winters is a freelance writer living on the Broadneck Peninsula
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