Scents and sensibility By GEORGE BRENNAN STAFF WRITER
The two guys on the radio are railing against liberal ''do-goodahs'' again. This time they're criticizing a proposal by a superintendent to make his school fragrance free.
A subcommittee at Upper Cape Cod Regional Technical School in Bourne is considering a policy to limit strong-smelling perfumes and colognes that caused a staff member and several students to complain of headaches and asthma attacks.
The radio rant is eventually reduced to body odor. ''Is that better?'' one of the hosts asks.
Lisa Nagy has heard it all before and will likely hear it again.
Nagy, 45, is chemically injured. A former emergency room doctor in Los Angeles, educated at Cornell University
and the University of Pennsylvania, she is now living on Martha's Vineyard, feeling better and spreading the word that people who suffer from multiple chemical sensitivity are not crazy.
When she wrote about the subject for a local newspaper on the island earlier this year, she got some positive feedback, referred some people for treatment and got this three-word e-mail from a reader: ''Get a life.''
It's a reaction people with the illness expect, but don't appreciate. ''There is some real hostility,'' she said.
Environmental medicine is an emerging field that continues to have its doubters. Next month, the American Academy of Environmental Medicine is sponsoring a national conference on the subject in Kansas City, Mo., covering such topics as ''the diagnosis and treatment of chemical sensitivity.''
According to experts, chemical sensitivity may affect up to 40 percent of the population and is more prevalent in women. Symptoms include chronic fatigue, muscle weakness, joint pain, rashes, asthma, headaches and respiratory ailments.
It's a two-step process, according to Nicholas Ashford, a professor of technology and policy at Massachusetts Institute of Technology who has researched the subject and is former chairman of a national advisory board for occupational safety and health.
A person is exposed to a chemical - a solvent, pesticide or anesthesia - that causes neurological damage. That triggers a sensitivity to strong smells such perfumes, detergents and fragrant soaps. Affected individuals can also have adverse reactions to foods and drugs.
Massachusetts Association for the Chemically Injured (MACI) provides support, education, resources and a referral network for chemically injured patients. The group been around since 1994 and has more than 150 members, although many more people have browsed its Web site and requested referrals.
There is a Cape Cod chapter, but a member of the local group declined to be interviewed for this story because of - well - the ''sensitive'' nature of the illness. She granted an interview to another newspaper and didn't appreciate the skepticism raised by others. ''I've been burned before,'' she said.
Experts in environmental medicine aren't surprised.
''It's like cigarette smoking was 30 years ago,'' said Dr. William Rea, who runs a clinic in Dallas designed specifically to treat patients with chemical illness. ''Nobody ever thought (cigarette smoke) caused problems either.''
Today, research about the links of secondhand smoke to respiratory ailments has led to smoking bans in restaurants and public places. The city of Calabasas, Calif., recently went smoke free in all public places - inside and out - creating the most stringent policy in the country.
Debilitating illness Nagy now believes the source of her chemical injury was the mold in her Los Angeles home.
The house had a built-in, 500-gallon fish tank. Water from the tank seeped into the home's wood, creating a mold problem that eventually led to serious health issues for Nagy, her husband and even the family dog.
She was an ER doctor going about her daily routine and getting sicker by the day - feeling weak. She had the symptoms of Lou Gehrig's disease and even underwent a muscle biopsy in the hopes of diagnosing her illness. The biopsy showed she had severe damage to her mitochondria, which produces energy in the body's cells.
Nagy was weak and losing weight. She had to gone out on disability from her job as an emergency room doctor because she was no longer strong enough to intubate a patient. She was crying constantly and couldn't tolerate being near her beloved horses.
''I wept all the time and thought I should go to a shrink,'' Nagy said. She did see a psychiatrist for about a year, but her health continued to deteriorate.
''I didn't know I had it until I went away, and got away from my moldy house,'' she said.
Nagy's inability to ride and groom horses also made her realize it was her environment that was posing the problem and making her ill.
''I never would have believed any of this before,'' she said. ''My father wants me to point out that I'm a regular doctor who had an epiphany.''
She's unable to return to work in the ER because of her chemical sensitivity and because she's still recovering, but she may someday return to medicine in the environmental field. Right now, she's concentrating on getting well.
''In medicine today, we think it's one problem and there's one pill,'' Nagy said.
Ashford, of MIT, said the scientific research is under attack by the insurance and chemical industries who don't want to recognize chemical sensitivity as a legitimate illness because of the liability such recognition would bring.
Raising awareness The decision by Upper Cape Tech to consider a fragrance policy shined the spotlight on chemical sensitivity locally.
Supt. Barry Motta said he became aware of chemical sensitivity by speaking with a staff member affected by the disorder. He decided to first ask staff and students to voluntarily curb their use of strong-smelling perfumes and even stopped his own use of cologne.
A subcommittee is now considering a fragrance control policy to include in the school's student handbook.
Jean Lemieux, a member of the state chapter of MACI, is aware of the school's efforts and praises them. ''They are addressing a local concern brought to their attention and taking steps to allow equal access,'' she said.
MACI, the American Association of Environmental Medicine and others are still swimming against a tide of skepticism.
''There is a great need to raise awareness of this illness,'' Lemieux said.
Not a new field
In one of the papers published by Ashford, he cites the first recognition of what was then-known as chemical susceptibility in 1950. An allergist was treating a cosmetics saleswoman complaining of asthma, fatigue, irritability and other symptoms.
In 1974, Rea, a cardiovascular surgeon, founded the Environmental Health Center in Dallas, Texas, where he treats patients suffering from multiple chemical sensitivity.
Not only is the center fragrance free - no soaps, shampoos, perfumes or detergents with strong odors - but he has also worked with a local Marriott to provide housing for patients who come from all over the country for the treatments needed to help them. A wing of the hotel curbs the use of strong-smelling cleaners.
Patients complete a detailed questionnaire and undergo lab tests, which include injecting patients with low levels of substances to identify the cause of their sensitivity. ''When the triggering agents are pinpointed, the physician determines an individualized program to help each patient achieve a state of maximum health,'' the center's Web site states.
That's allowed Nagy, who has been treated at the Dallas center, to get back on a horse.
Treatment can include educating patients about their sensitivities, nutrition and environmental exposures. Some receive sauna treatments and immunotherapy, a specialized type of vaccine treatment.
None of the center's treatments is covered by health insurance.
In a brief telephone interview, Rea said more people become aware of environmental medicine everyday. He said it's impossible to know just how many people are affected by ailments triggered by chemical exposure, but he estimates it's about 40 percent of the population.
A National Academy of Sciences working group, which Ashford participated in, concluded that more research is needed. The group included both believers and cynics. ''This was not a bunch of groupies who got together,'' Rea said.
While there is currently no movement to fund research nationally, there is a growing sympathy for people afflicted with multiple chemical sensitivity, he said.
But he and others concede there are still plenty of people who think it's just neurotic housewives.
''Some you can't say anything to, they just have to die off. You can't convince them,'' Rea said. ''But most people can be educated.''
posted
Although I am better, Cave....there are still stores I cannot visit. One was always a favorite of mine; a craft store. Too many scented candles and potpourri in there for me and I simply cannot tolerate these things!
This seems to happen for a lot of lyme patients.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Thanks for the article. This is one of my worst problems too.
I am super sensitive to formaldehyde since getting Lyme, and the last time we bought a new bed, I had to sleep on the front porch for 77 days. Only an AET treatment by a holistic doctor, made it possible for me to sleep in that new bed.
I did not believe in AET until I tried it in desperation and it worked. We have to buy all other furniture from consignment stores or off the showroom floor,and even a new shower curtain has to be hung outside for 3 days before I can bring it in the house.
I can't shop for clothes in anything but outlet stores. I usually buy from mail order catalogues, and then wash the item before wearing. I must buy shoes he same way and hope they fit. The smell in the stores is unbearable and can send me into shock.
I can't go to any public building where new carpet has been put in, or any brand new buildings for at least two years. I had to change my long-time eye doctor recently due to his moving into a brand new building.
I think the things that bother us depend upon overexposures. I am not bothered at all by paint, perfume or scented candles, but fabric stores are completely off limits.
People look at you like you are crazy when you tell them these things.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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bettyg
Unregistered
posted
Nan, great article and THANKS for spacing it just right for us neuro lymies! I appreciated that.
This has plagued me for years too, but after reading the above comments; mine have been very limited vs. what you go thru.
Went w/former classmate to a state office bldg. about her SSDI claim, and the bldg. had a copier center in the basement of their building.
We took the elevator which we found out was super slow & about died from all the TOXIC FUMES INSIDE IT. I walked down many floors holding my nose.
Yes, I can't be around perfume, smokers & on their clothing, diesel fumes, some office & cleaning products, etc.
Yes, I was happy to see the newspaper article in our newspaper awhile back.
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