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." ---
Wendi Winters is a freelance writer living on the Broadneck Peninsula
Posts: 59 | From Canada | Registered: Mar 2006
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bettyg
Unregistered
posted
thanks for posting this; my heart goes out to her! we've all experienced a lot of this, but NOT TO THE EXTENT of her chemical sensitivity.
it's so darn frustrating dealing with all of these things.
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TerryK
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Member # 8552
posted
She seems like the perfect candidate for Dr. Shoemaker's protocol.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
My heart goes out to this lady....my husband had exposure to black mold in 2005....it took us months and many doctor's to figure out what it was. It was along process and we lost everything we owned due to mold toxins, the doctor said if we took it with us to our new place he could get sick again...it also brought out his lyme again...mold is awful!!!!
-------------------- joy Posts: 24 | From westerly ri 02891 | Registered: Aug 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
My LLMD said bb can make some very sensitive to molds while others in a house w/a normal immune sxs can be unaffected. Interesting how some have responded to antifungals like Vfend, Sporanox etc.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Hi Interesting. Foggy-- the ARt testing I did showed up I had sensitivity to almost every mold. and I may even have mold in my jaw. I found when I got lyme, the mold sx worsened. Did anyone here take sporonax for mold or any other antifungals? my naturopath suggested nasal spray and maybe ozone in the jaw.... how can one tell if it's lyme or mold that's causing some of these sx ? can mold cause bone pain? I was wondering if the author expericned any kind of bone pain with it? is there any way I could contatc her, anyone know? I have awful pain in the spine that feels like burning acid. thanks
my husband had the burning spine with both mold and lyme....he has taken diflucan given by dr p in ct. for the lyme but we think it may have helped with the mold to. good luck
-------------------- joy Posts: 24 | From westerly ri 02891 | Registered: Aug 2005
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Foggy
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posted
Cit, I also had IgE testing for specific molds in my region. LLMD said it's hard to distinguish sxs, thus, testing & treatment if appropriate.
Sporanox also comes in a sinus rinse.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
How do you know if you are sensitive to molds? How do you get rid of them in your house?
Posts: 204 | From Wyoming | Registered: Feb 2003
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posted
Foggy, your LLMD said they can't really be distinguished. do you know/ can you ask him if you don't mind, if mold can affect the bones????? I know the toxins can cause similar neuro sx as lyme. But what I'm real anxious to know is if it can affect the bones at all and cause pain? I would soo appreciate an answer to this one. Thanks
posted
Citrus, Yes, it can affect the bones. Not sure exactly how but I do know the burning you described is a definite yes. Mold aggravates lyme and vise versa. Like throwing gas on a fire. Burning bones has been a daily sx for me for years. Some days are better than others, gets fun when the skin and muscles join in.
posted
This was my original issue from a job I was working at. That's when the dr. said I had Lyme also(from testing). I drove myself 3 hours to doctor. Was sick(head, vertigo, ears, eyes...), then 2 months of abx, artemesia, and cholestyramine has made me incapable of being able to walk to bathroom on most days. I also end up in ER every 2 weeks from going into 'shock'.
I also suddenly can't tolerate any medicines at all. This all happened overnight. Pretty awful when you get bedridden(my computer is on bed) and uncapable of doing anything after going to doctor for treatment.
Did I mention I can't take any medicines? Nasal spray caused me to have 2 day anxiety attack(just 5 minutes of anxiety/panic attack is rough). I'm stuck between life and death with no way out.
I'm surprised I'm still alive. I can't drink Pepsi/Coke without have an anxiety attack.
-------------------- Never walk through a cornfield backwards.
posted
citrus, I don't see bone pain specifically mentioned in an extraction from one of Dr. K's articles (below), although he does indicate ``body aches and pains'' under the acute exposure heading.
The lady in the article could possibly be contacted through the writer: [email protected]
There is also a good summary of mold issues on Scott's website:
Many fungi produce toxic metabolites called mycotoxins, many of which are neurotoxic. Over 100 species known to cause infection in humans.
Three classifications of infection:
1. Systemic (by inhalation): in healthy individuals self limited illness, in immune suppressed individuals may disseminate (generally fatal).
Example: Histoplasmosis, Coccidioidomycosis and Paracoccidioidomycosis, Blastomycosis
2. opportunistic infection (common in Lyme and as result of heavy metal toxicity): facultative parasites - can use living and dead substrates for nutrition .
Example: Stachybotrys Candida Aspergillus Mucor
Cladosporium (most commonly found genus of fungi in outdoor air in temperate climates; refridgerators and moist window frames, discolors interior paint, textiles and paper, soil of over-watered house plants, sporulates heavily with buoyant spores, together with Alternaria causes hay fever and asthma)
Rhizopus Cryptococcus
Fusarium graminaerum: in water damaged carpets, often found in schools, also in cereals
3. Dermatophytes (hair, skin, nails): Usually contracted by direct contact through sharing grooming utensils, showers, and towels). Also passed on via soil.
Mycotoxins:
* Aspergillus and Penicillum species produce:
o Aflatoxin
o Sterigmatocytin
o ochratoxin
* Stachybotrys species and fusarium produce (worst is probably stachybotrys chartarum - greenish-black fungus that grows on fiberboard, gypsum/dry-wall, dust and lint, wallpaper, insulation, particleboard,water-damaged wood. The spores are not destroyed in fire.
Spores gravitate to floor: even finding one airborne spore often indicates ``lost cause''):
o Satraoxins
o Tricothecine (extremely potent): several subtypes of macrocytic tricothecenes: stachybotryolactone, verrucarin J, roridin E, satratoxin F, G&H, sporidesmin G, trichoverrols and trichoverrins,9-phenylspirodrimanes(cyclosporins &spirolactams)
o T-2 toxin
o Vomitoxin
o Fumonisin
o Zearalenone
Numerous other mycotoxins produced by these and other fungi of which the health effects remain unknown
Symptoms of mycotoxin exposure:
Acute exposure:
Acute memory loss Sinus problems Flu like symptoms Body aches and pains Sore throats Diarrhea Generalized malaise Headache Nose bleeds Dermatitis Multiple ANS symptoms: neurogenic switching, blocked regulation Symmetric arthritis of spinal joints and small joints of fingers
Chronic exposure:
Immune suppression with all it's consequences (lower proportion of CD3 T-lymphocytes)
CFIDS MCS Fibromyalgia Memory loss and multiple cognitive problems Hair loss Ovarian cysts and fibroids, fertility problems both male and female Chronic sinusitis Cancer (many mnycotoxins are highly carcinogenic)
In children: neurodevelopmental problems (autism, seizures,ADHD) and cancer
Fetal malformations and other problems MS like symptoms and CNS pathology Parkinson like symptoms and CNS changes mood disorders uncontrolled emotions psychiatric presentation Tingling, numbness vibrations (both inside head and extremities) ANS symptoms: blocked regulation
Human studies on infants Ueno, 1980; Jacob et al., 1994) in Jan 17, 2005 in MMWR: cluster of fatal pulmonary hemorrhage and hemosiderosis
Animal studies: necrosis and hemorrhage within brain, thymus, spleen, intestine, heart, lung, lymph nodes, liver and kidney
Allergic symptoms:
sinusitis cognitive and memory problems (neurogenic switching) bronchitis asthma rhinitis conjunctivitis urinary urgency blurry vision loss of visual contrast (FACT) hypersensitivity pneumonitis
TREATMENT
o Indoor air quality inspection and culturing of organisms: leaky roofs, plumbing leaks, overflow from sinks and sewers, damp basement or crawl space, steam from shower or cooking, flooding,sprinkler spray hitting the house or underground flow of rain water, humidifiers, damp clothing or dryers exhausting indoors
o HEPA air filter in home
o Avoidance (often means to move)
o Klinghardt neurotoxin elimination protocol (most important: Freeze Dried Garlic, KMT microcurrent therapy and Phospholipid Exchange) www.neuraltherapy.com
o Desensitization (EPD, homeopathy, ART based techniques (NAET,EAV or EDS, APN allergy technique)
o Intravenous protocols (Vit C 25-5-gms, glutathione 600-4500 mg, alpha-lipoic acid 600 mg over 1 hour, Hepa Merz =ornithine aspartate, weekly Ca-EDTA, nutritional ivs (Majid Ali)
o Medical drug and others: chlorella, cholestyramine, beta-sitosterol, reedgrass - and apple pectin, charcoal, propolis, ground flax seed and fiber for prevention of enterohepatic recirculation of toxins,fluconazole and other antifungals, nystatin
October 2002/2nd edition Jan 2006 Dietrich Klinghardt, MD, PhD Bellevue, Washington, USA www.neuraltherapy.comPosts: 59 | From Canada | Registered: Mar 2006
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