Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

"This has changed my life in so many ways."

Debbie leads me through her San Francisco apartment with the careful grace of one who must always conserve energy. She is slender, perhaps a little too slender, her red sweater and black hair framing a pale face and delicate, worn smile. She is also a victim of an illness so elusive that those who contract it suffer not only from chronic pain, but also from public ignorance of its existence.

It goes by many names. Sick Building Syndrome (SBS) occurs when you feel temporarily sick while occupying a building contaminated with one or more chemicals or organic compounds, such as "outgassing" emissions from new carpeting or floating spores from moldy air ducts, to which you are especially sensitive. On occasion, the exposure can render a victim chronically ill for years afterward, which is called Building Related Illness (BRI).

Both belong to an alphabet soup of similar disorders, such as Multiple Chemical Sensitivity (MCS), Toxicant-Induced Loss of Tolerance (TILT), Environmental Illness (EI) and becoming Chemically Injured (CI).

Victims can suffer from a broad range of symptoms, such as chronic fatigue, nausea, vision problems and memory loss. What causes an environmental illness is still unclear, but it may be that exposure to certain substances can "overload" some people's immune and detoxification systems to the point that they no longer work properly.

Both the World Health Organization and the U.S. Environmental Protection Agency recognize Sick Building Syndrome and Building Related Illness as a public health problem. Yet, because an environmental illness is difficult to diagnose, can appear and disappear seemingly at random, and often results in lost time at work, many victims are branded hypochondriacs or shirkers by employers, peers, and even doctors.

A 42-year-old professional acupuncturist and online community monitor, Debbie settles us into her neatly kept office -- a converted bedroom -- for our interview. She asks that her last name not be used because she doesn't want her acupuncture clients to know about her condition. "Relationships have suffered because of that," she says, including those with members of her family. "Basically you live with an illness that most people perceive as being psychosomatic. There are no tests that can measure this illness, so nobody believes you."

Two years ago, the landlord painted the room, so we can only stay in it for a short time, or her larynx will begin to swell. Yet this is the only place in the city where she can work without falling seriously ill. "My home is my safe haven because I've made it that way. For instance, I can only buy old furniture. People with environmental illness can't be around particle board. The other day I bought some that was really moldy. I had to get rid of it."

Every day, Americans are exposed to hundreds of chemicals, which sometimes combine to form even more complex and untested compounds. One of the more maddening aspects of Multiple Chemical Sensitivity is that even if only a single substance -- formaldehyde, for example -- made you sick in the first place, as the illness progresses you become sensitive to a wider range of chemicals. So anything, from a stick of furniture to an aerosol spray can, might provoke an unexpected allergic reaction.

Not unlike a wheelchair-bound paraplegic, Debbie's disability is also one of mobility. She can visit most offices and homes only briefly, and travel is nearly impossible. "I react on planes and trains if they use any kind of disinfectant," she says. "I'm very, very fortunate that I have a job where I only have to go in for meetings once a week and we meet outdoors. But there are occasions where I've had to go into the office for a couple of hours, and it usually means I'm sick for days."

Anthony Bernheim, a prominent San Francisco architect who supports green design principles, partly blames the careless use of recycled materials in product manufacturing. "For example, where recycled paper is used, there is the potential to introduce formaldehyde emissions. More care needs to be exercised before resource-efficient materials are used just because of their recycled content."

Exposure to formaldehyde gas, used as a paper coating and pressed-wood adhesive (as well as in many other common products) can result in severe allergic reactions or even cancer among environmentally sensitive individuals.

Debbie never learned which combination of chemicals first laid her low, but she does know where and when. Her troubles began in the spring of 1998, at a temporary job assignment in one of San Francisco's newer highrises. "I was working in an office that had been recently painted, (had) new carpeting, and all the cubicles and furniture were new. You could not open the windows. The circulation in that particular area was very poor, and other people were complaining of not feeling well.

"I started to have some very weird symptoms that I'd never experienced before: headaches, my eyes were burning, and my mouth was burning. I'm in the health industry, so I started to suspect something like Sick Building Syndrome was going on. But the assignment was ending and I had no idea at the time that my staying there would have permanent results to my health. I thought, 'OK, I'll be better once I leave here.'"

As would most of us. Just getting through the day involves dodging so many visible dangers that we rarely have time to worry about the invisible ones. "The majority of the people with Sick Building Syndrome aren't going to the doctor," according to Dr. Rajiv Bhatia, director of occupational and environmental health for San Francisco's Department of Public Health.

Yet Debbie did visit a doctor, after her symptoms persisted for weeks no matter where she worked, in an unsuccessful attempt to receive Worker's Compensation. "As is typical of people with this illness, there are no tests to measure any kind of injury to your immune system or to your liver, so he wrote a very long report implying that this was all in my head," she says.

Bernheim, the architect, says experts are lagging in linking environmental toxics to illness: "The medical profession has been slow to make the connection between the symptoms and Sick Building Syndrome in the short term, and Building Related Illness over the long term," he says. "With BRI, it is particularly difficult to make the connections between cause and effect, since BRIs may take some years to develop in the body."

"The problem is the vagueness of the term," says Bhatia, referring to Sick Building Syndrome. Without solid evidence, a smoking gun that points to a specific building or substance as the cause, physicians find it a challenge to relate a patient's symptoms to an environmental illness.

For years, victims of chronic illnesses, especially women, have complained of having to put up with busy doctors who have no time for mysteries. Often these patients are accused of faking symptoms, since there are no open wounds to show.

Fortunately, after several more tries, Debbie found a sympathetic physician. "She ran a lot of tests and basically nothing showed up. But based on my symptoms, she realized that I was unable to work so I was able to go on short-term disability for a year." Now totally self-supporting, "I try to remain a positive person," says Debbie. "But there are times when it can be overwhelming, because you basically become a prisoner in your own home."

Environmental illness victims have a much less-developed support network than people with more well-known ailments, such as HIV or cancer. Debbie tried without success to start a support group in San Francisco. Groups do exist in Alameda, Sonoma and Mendocino counties. Debbie also contributes to an international mailing list operated by and for sufferers. "Occasionally I'll go on there and talk to people," she says. "But I've never met anybody else in person who is as sick as I am."

Still, she remains hopeful for the future, and credits Chinese herbs and acupuncture with helping her to remain functional. "I think that as more and more people put two and two together, that they have these chronic, unexplained illnesses, and the doctors start becoming more aware and more accepting, things will start to change," she says. "But we're really far away from that happening."

The interview has ended. I turn off the tape recorder, put on my coat, say my farewell, and head for the door. Suddenly Debbie stands up, rushes toward me and confesses, almost apologetically, that sometimes she wishes that she suffered from cancer instead.

Then, at least, people might believe her.

Tips For Keeping Your Home Healthy
My wife is the Spider Woman. She grows spider plants all through our home, where they hang ominously over the tops of bookshelves, swing silky tendrils from the bathroom ceiling, and breed in water-filled canisters crowding the kitchen sink. I keep expecting them to break loose from their roots and feed on me in my sleep.

No, this isn't a rain forest fetish, just a modest attempt to keep the air fresh and our allergies at bay. Certain plants, such as spider, philodendron and peace lily, actually absorb invisible toxic gases emitted by common home and office products, according to "How to Grow Fresh Air: Fifty Houseplants That Purify Your Home or Office" (1997, Penguin Books), by NASA plant researcher B.C. Wolverton.

My wife's interest in plants is indicative of a growing concern over the quality of indoor air in our homes and workplaces. Such organizations as the Environmental Protection Agency, the National Safety Council and the World Health Organization warn that many of the manufactured goods that we use every day -- the wooden furniture that we sit on, the paint that we decorate with, the plastics that we use for just about everything -- commonly produce toxic fumes, a process called outgassing. The smell of new paint, for instance, is an extreme example.

People who develop an acute sensitivity to one or more of these toxic "outgasses" can contract an "environmental illness," such as Sick Building Syndrome, with symptoms that range from chronic fatigue and nausea to vision problems and memory loss. Even people without an acute sensitivity can suffer from milder symptoms, such as a vague feeling of tiredness or lack of energy while indoors. So no matter what your state of health, you can improve your overall sense of well-being by improving the quality of the indoor air that you breathe. Here is a good way to start.

Step One:
Get some fresh air into the building if possible. Outgasses are much less of a problem if indoor air is constantly being replaced with cleaner air from the outside. Also, a poorly ventilated room that's full of people will lower the oxygen and build up the carbon dioxide levels. So throw open your windows once every day or two, even on a hot or cold day.

There are places, of course, where you can't open the windows, or where the outdoor air quality is also suspect. High Efficiency Particulate Air (HEPA) technology air cleaners can freshen stale rooms in your home or workplace by filtering out tiny particles that you would otherwise breathe. The local hardware store or pharmacy will probably carry some inexpensive models. You can also invest in higher-end equipment from such companies as Colorado-based Absolute Air Cleaners and Allergy Products which, according to Vice President Barry Cohen, are more efficient and require fewer replacement filters.

Cohen has a very personal reason for getting into the clean air business, having been "chemically poisoned" while working as a contractor who treated swimming pool decks with epoxy resins and acrylics.

"I was too stupid at the time to know how dangerous it was. It hurt my immune system badly, I was sick for years, and I almost died." Now he markets environmentally friendly products to chemically sensitive individuals, as well as businesses, the military and even the White House.

Step Two:
Look around the building for possible sources of contamination, such as particle board furniture (which contain formaldehyde), cleaning products (which can contain volatile organic compounds), and old books (which may be moldy). This net casts pretty wide, with a typical house or apartment containing hundreds of chemicals and organic compounds. Since most of us lack advanced degrees in industrial chemistry, the trick is figuring out which, if any, of these substances may be significantly bad for your health.

San Francisco architect Anthony Bernheim, a prominent proponent of green design principles, suggests a surprisingly simple method: "Odor is a first indication of the presence of irritants in the air. So when choosing materials, smell samples of the products first." If it makes you feel ill or queasy, bingo.

Clip this paragraph and nail it to your forehead. Occupying a space that has been recently painted or carpeted, or filled with new furniture, is a major cause of Sick Building Syndrome. When new, these products will outgas at high levels for weeks, months or even years after installation, until the chemicals have had a chance to settle down. So whenever possible, insist that the space is aired out thoroughly before you reoccupy it.

Step Three:
Once you identify an offending product, try to replace it with a healthier alternative. Unfinished furniture made from solid wood, for instance, outgasses much less than either particle board or treated wood. Also, consumers are starting to ditch chemical-laden commercial household cleansers in favor of more environmentally friendly versions. For instance, we use Life Tree HomeSoap, a phosphate-free all-purpose cleanser made from vegetable and citrus oils.

If replacing or disposing of an item is not an option, you can try keeping it in an airtight container. Valuable old books, for instance, can go behind glass shelving or into plastic bags to slow mold growth. If you want to do further research on a specific product or chemical and how to protect yourself from its effects, the MCS-CI-Exile discussion forum is a good place to ask questions of people with similar experiences.

Step Four:
Keep your carpeting in good condition. Left alone, it can create a zoo of toxic particles, such as dust mites, mold and bacteria. Some particles are so tiny that a standard vacuum cleaner filter may be too porous to pick them up, thus allowing them to blow back into the air. You can solve this with a vacuum cleaner that includes a HEPA filter. Originally designed by the Atomic Energy Commission to remove radioactive materials from industrial air ducts, it can filter out particles as small as .03 microns.

According to Mike Boyle, the assistant manager at Vacuum World in El Cerrito, Calif., HEPA vacuum cleaners are very popular among customers with special needs. "People who have allergies and asthma can really tell the difference." He adds that they don't necessarily cost more than a non-HEPA vacuum cleaners, depending upon which model you choose.

Not everybody is willing to vacuum the entire house every few days, and some of us find even the cleanest carpets too much of a dust magnet. If you own your own home, one solution is to rip out the rugs and install hardwood or tile floors. If you rent, consider looking for an older apartment without carpeting.

Step Five:
Keep your body healthy, thus better able to handle whatever toxins it does encounter. "I believe the illness [Sick Building Syndrome or Building Related Illness] is caused by many things coming to a head at once, among them a breakdown in the immune and liver detoxification systems, so strengthening these two systems should prove beneficial," says Debbie, a professional acupuncturist who suffers from Building Related Illness who did not want to use her full name (interviewed in our last column).

To that end, she takes a multivitamin anti-oxidant formula with milk thistle to improve her liver, and a Chinese herbal formula that contains Astragalus Huang Qi for her immune system. Of course, every body has different needs, so consider contacting a qualified nutritionist to develop your own plan. At the very least, eat healthy, get some exercise, and spend some time outdoors.

Regardless of whether you are chemically sensitive or just interested in staying fit, clean indoor air remains important to your health. Don't limit your concerns to the home; armed with the right information, you might convince your employer to take a closer look at workplace conditions as well. So spend some time playing private detective, investigating your immediate environment, examining odd pieces of evidence, and letting the culprits dissolve into the fresh air of day.

Sufferers Start To Raise Voices, Take Action
You may not realize it, but the buildings that we live and work in have the capacity to make people sick. A few agencies, such as the World Health Organization and the U.S. Environmental Protection Agency, have attempted to educate the public about the dangers of poor indoor air quality. But Sick Building Syndrome and related illnesses receive far less attention than smoking, auto exhaust and other more well-known forms of air pollution.

What is new is that the people who get sick are also starting to get mad. Slowly, sometimes haltingly, they are also starting to organize. "If landlords maintained their buildings safely, we would not be getting increasing requests for help in seeking accommodations for the chemically sensitive," says Barbara Wilkie, current president of the Environmental Health Network, an alliance of environmental illness sufferers.

The effects of toxic exposure from airborne contaminants are difficult to diagnose, especially when the specific agent is hidden behind a wall or in an air duct. Sick-building victims are often unaware of why they feel ill, only that they do. "I think most people don't even realize that, for example, new carpet is poisonous," says San Francisco affordable housing activist Todd Edelman. New carpeting can emit toxic fumes (a process called outgassing) from the hundreds of chemicals and volatile organic compounds (VOCs) that are used to manufacture its fibers, backing and adhesives.

But as public awareness increases, victims have begun to find one another and organize for mutual support and, at times, activism. Most notably, over the past few years building occupants have banded together to launch campaigns against landlords for failing to control runaway growth of toxic indoor mold, such as by the residents of several apartment complexes in Hunters Point.

In another California case, a judge and court employees sued Tulare County in March 2000 for allegedly negligently allowing mold growth in a courtroom which, says the lawsuit, caused hair loss, dizziness, vertigo, abdominal pain, respiratory distress, tinnitus, facial swelling and severe rashes.

Likewise, in November 1999 residents sued the landlord and employees of their Los Angeles-area apartment complex, claiming that mold growth caused by inadequate waterproofing caused personal injury and property damage. In Sacramento, three bills were introduced recently to improve mold-related building standards.

While many victims of sick building illnesses are otherwise ordinary citizens caught up in an unhealthy housing situation, others are chronically sensitive to chemicals and organic compounds that are commonly found in modern buildings, such as formaldehyde. Many of these sufferers express a simmering rage against negligent landlords, physicians with little training in environmental illnesses, and the government for dragging its heels in granting disability payments or establishing building codes that improve indoor air quality.

"Society's reactions create and reinforce the isolation that we live in," says Melissa Kaplan, director of The Carousel Network, a patient support group in Sonoma County, Calif., that publishes a newsletter and holds monthly meetings for people concerned about environmental and related illnesses. "Telling someone that 'it doesn't smell very much' or 'we didn't use very much' is like telling someone in a wheelchair that 'there's only a couple of steps.'"

"We have many of the same problems that AIDS patients have -- except we are HIV negative," says Barbara Herskovitz, who moderates a patient support group in Florida and who contracted a chronic disability from a contaminated courthouse in that state. "Our immune systems are trashed, we are chronically fatigued, have brain fog, some of us were treated repeatedly with antibiotics for 'bronchitis' when we didn't have bronchitis."

Few support groups exist at the local level, partly because many patients are unable to travel or visit unfamiliar buildings without risking a relapse. Many local communities, even within the supposedly progressive San Francisco Bay Area, have none at all. So a popular alternative is the virtual meeting ground of the Internet. A recent digest of the Sick Buildings mailing list, for instance, included a discussion on mold mitigation requirements in school buildings and an update on contaminated-building lawsuits.

Likewise, the Environmental Health Network provides a Web-based information portal. "Our numbers grow," says Wilkie, who stresses that she is speaking as an individual, and not in her capacity as an EHN president. "They don't grow because people think this is a really fun illness to have. Our numbers grow because we haven't been given the time of day by mainstream medical industry, various government agencies and, in the past, mainstream media."

To see if a nosy columnist might get "the time of day," I contacted some of the bureaucrats who run the city of San Francisco. First off, it took two weeks for a spokesperson from the Department of Building Inspection to return my call, only to say that DBI was "not qualified" to comment on the subject of sick buildings, suggesting instead that a call to the Department of Public Health might prove more fruitful.

"We have not spent much time on (Sick Building Syndrome) and have not identified it as a major problem," says Dr. Rajiv Bhatia, DPH's director of occupational and environmental health. "If it's done legally and up to code, I wouldn't expect remodeling to be a problem." While I very much appreciate Bhatia's open and straightforward comments, it does seem rather odd that DPH would comment on building codes, while DBI would not.

Still, some of the folks at City Hall are beginning to see the light. In 1999, San Francisco adopted the Resource-Efficient City Building Ordinances which, among other things, require that new buildings owned or leased by the city demonstrate adequate indoor environmental quality and minimize the use of toxic materials. Current projects coordinated by the Department of the Environment include Laguna Honda Hospital, the new California Academy of Sciences Museum, and a new city office tower at 525 Golden Gate Ave.

Despite an upbeat attitude toward the projects, Mark Westlund, the department's public information officer, agrees that indoor air quality is not an overall priority for city government. He says, however, that city officials are starting to pay more attention to the issue. "Once we start building a half-billion-dollar hospital, awareness becomes really focused," he says.

But there are others within the building industry itself who are addressing the issue. Real Lapalme, the owner of Berkeley, Calif.-based Green Man Builders, specializes in environmentally friendly home and furniture construction. After exposure to copper arsenate wood preservative caused his health to deteriorate, Lapalme began promoting green building principles through demonstration projects and university lectures.

His efforts have been met with mixed success. He initially found support among clients and colleagues in Marin County, Calif., where environmentalism is popular. "When I moved to Humboldt County, my efforts to educate the market about green building got me tagged as a tree hugger, with a negative impact on my business," he says. "Back in the Bay Area now, I am more aware of the political slant that people tend to put on questions of air quality, and I try to avoid pushing people in directions that they are not ready to go."

For individuals suffering from an environmental illness, maintaining good health requires more than dieting, exercise and laying off the cancer sticks. Sometimes it also requires a political diet. HIV, breast cancer, hepatitis, sickle cell anemia -- consider the long and courageous list of individual patients who banded together to form a community that demands better information and treatment from mainstream society.

People who suffer from sick buildings -- or for that matter, from manufactured chemicals and air pollution in general -- are just beginning to understand that there is indeed a method to their maladies, that they are neither hypochondriacs nor alone in their suffering. "For the most part, we are fractured into umpteen dozen splinter groups," says Herskovitz.

Right now political action is embryonic, a lawsuit here, a letter-writing campaign there. Like all good fights, it is slow, difficult and often discouraging for its foot soldiers. "Until people -- including building managers, employers and the architects and designers who cause sick building and sick spaces to be built -- understand that this is a very real, very disabling disease, there will be no change," says Kaplan.

Lapalme agrees. "For the industry to willingly change their way of work, they need to see for themselves the benefits involved. There is a tendency to perceive environmentalism as an imposition of the wealthy on honest working folk. An educative approach would do well to precede a legislative one, so as to allow the trades to initiate changes themselves."

But that is how political activism always starts, with education, understanding and perseverance. And ultimately, the good fight is also a necessary fight. As necessary, perhaps, as breathing.

David Bragi, a freelance journalist who lives in El Cerrito, California, is Editor of the multicultural webzine New Tribal Dawn. Sick Building Syndrome: Victims Of Mysterious Illness Suffer From Public Ignorance. Originally published online by SF Gate.

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