By Nancy Eichhorn
When April Carlise leaves her Dover apartment she wears a face mask, a light blue windbreaker and a blue hat to keep pollen and chemical odors from settling in her lungs, on her blouse or in her hair. The 60-year-old Durham native rarely invites company over, preferring to meet people, very briefly, in the hallway of her apartment building, right outside her apartment door to keep smells like colognes, fabric softeners, lotions from entering her apartment. "Sometimes I set up two chairs in the hallway, and we sit and talk briefly," Carlise says, adding that another option is meeting people in downtown Dover, when she’s doing errands since she doesn’t need to wear her face mask there.
"If I meet people at the Cafe on the Corner, or somewhere else, I can also take off my hat and windbreaker." Why the extreme protective measures? Carlise says she lives with multiple chemical sensitivities. Considered a complaint syndrome – a group of symptoms that people complain about – Multiple Chemical Sensitivity is a chronic condition often characterized by multiple symptoms in multiple organs affecting multiple senses. MCS is triggered by a virtually endless list of environmental exposures, usually though not always identified by odor such as petroleum-based synthetic chemicals added to household products, food and clothing, as well as chemicals present in the air we breathe.
Toxic exposure – acute or long term where chemicals enter the body faster than it can detoxify and eliminate them – results in excess toxins being stored in the fatty tissues of the body such as the heart, liver and brain. Once the initial exposure causes damage, smaller triggers like perfumes, soaps, even the ink in newspapers can trigger reactions ranging from headaches, rashes, asthma, muscle and joint aches, to fatigue, memory loss, confusion, and depression, says Carlise.
Forty-two years ago, Dr. Theron Randolph, a Chicago physician, initially described people sensitive to very small exposures of chemicals in their surroundings; chemicals most people took for granted such as those released from household cleaning products, building materials, and pesticide residues on foods. Avoidance was the best treatment. Those bothered by growth hormones in commercial beef were encouraged to eat organically raised beef. Chemical pollutants in the home were controlled by elaborate filtration systems as well as nontoxic cleaning products. All natural fibers replaced synthetics in clothing, towels, linens, etc.
MCS is also known as chemical injury; chemical AIDS; chemophobia; ecologic illness; environmental disease; environmental sensitivity; immune dysregulation; total allergy syndrome; and 20th Century disease. The aliases are as varied as the symptoms people attribute to the plethora of chemicals they believe are assaulting their health. Patients with these multisystem/ multiorgan conditions have received a litany of diagnoses. In the 1960s it was Epstein-Barr syndrome, in the 1970s, hypoglycemia. Chronic Fatigue Syndrome (CFS) appeared in the 1980s, followed closely by microplasma and fibromyalgia syndrome then multiple chemical sensitivity. The most recent name to surface is Syndrome X.
According to the American Academy of Allergy, Asthma and Immunology’s Web site, MCS is now called Idiopathic Environmental Intolerance (IEI). The Web site refers to a 1996 workshop’s final document organized by the International Programme on Chemical Safety of the World Health Organization that states the term MCS "makes an unsupported judgment on causation (i.e.: environmental chemicals), does not refer to a clinically defined disease, and is not based on accepted theories of underlying mechanisms nor validated clinical criteria for diagnosis." Furthermore, the Web site states the relationship between exposures and symptoms is unproven. "Some people jokingly say, ‘If you go to infectious diseases, they call it CFS; go to a rheumatologist, they call it fibromyalgia; go to an OEM, (doctor of occupational and environmental medicine) and they call it MCS,’" says Dr. Robert K. McLellan, associate professor of medicine at Dartmouth Hitchcock and medical director of Employee Safety and Health at Dartmouth Hitchcock Medical Center in Lebanon. "Calling it MCS tends to imply we know more about it than we do," McLellan adds in response to the newer term Idiopathic Environmental Intolerance. "We know what it’s not."
Controversial condition Some people say MCS is the new chronic fatigue syndrome. "Oftentimes it’s the same patients still looking for answers," according to a Seacoast allergist who spoke on the condition of anonymity. "It’s an area that should be recognized by medicine but would take a lot of energy to do it," she says. "The problem is most people (with MCS) look crazy. If you put a dot pattern on top of them, craziness fits." McLellan says research does suggest that an excessive amount of pre-existing psychological distress co-exists with MCS, prompting doctors to ask, "Is it a physiologic problem in the body? Or a psychological problem in the head?" A comparison of those with MCS symptoms has been noted with those with panic disorder, post-traumatic stress disorder, and adult manifestation of childhood abuse. According to McLellan, however, asking the question is ridiculous. "It does not obviate the need for us to better understand what is going on," he says.
Carlise, a 1962 graduate from the University of New Hampshire, knows friends and family misunderstand her illness. She says MCS is a co-factor of her CFS. Yet, her symptoms are real; her disabilities life altering. It’s difficult to live in the midst of social doubt, she says. According to the National Institute of Environmental Health Sciences Web site, "MCS is something of a medical mystery and the medical community is divided over whether or not MCS actually exists." The Centers for Disease Control and Prevention has rejected MCS as an established organic disease along with the American Academy of Allergy and Immunology, the American Medical Association, the California Medical Association, the American College of Physicians, and the International Society of Regulatory Toxicology and Pharmacology.
The AMA cites the lack of conclusive scientific evidence. "It may be the only ailment in existence in which the patient defines both the cause and the manifestations of his own condition," according to the American Academy of Family Physicians Web site. Yet the Access Board for the Americans with Disability Act recently created an MCS ad hoc committee to research causes of MCS (attitudinal) barriers and to determine what guidelines are needed to make buildings safer and accessible for those with MCS. It has also contracted with the National Institute of Building Sciences to investigate indoor air quality and determine guidelines for those with MCS. MCS is so controversial that many Seacoast area health practitioners contacted for this report refused to comment on the record.
It is difficult to scientifically identify a patient with MCS, says a Seacoast allergist on condition on anonymity, explaining why it is a touchy diagnosis. There are no defining criteria, no diagnostic symptoms. And there are no readily available tools to objectively prove what’s wrong with these people, she says, though random samples show people complain of adverse symptoms when exposed to chemicals both neurologically and psychologically, including headaches, spacey-ness, nausea and irritability. Many physicians are unwilling or unable to go to the depths necessary to diagnose people with MCS – building a stainless steel room with triple filters and a reverse flow air system in order to test exposure, she says. Short of that, there’s no science, no recognized test that can give a read-out for chemical sensitivity, she says.
Dr. Joseph Py, DO, and an addiction specialist, treats patients with MCS at his Amesbury, Mass., practice. Py is medical director of The Discovery House, a Maine-based methadone clinic with locations in South Portland and Waterville. Py, who lives in Portland, says he can see five patients with MCS who will all have different reactions – their teeth may hurt, or they may experience headaches, body aches, fatigue. "MCS defies the way we classically look at people in medicine," Py says. "Traditional models of toxicology don’t apply." Illnesses like MCS demand a new paradigm, a shift in science and thinking, says Py, suggesting that these patients challenge doctors to look at illness and how the body deals with it in different ways. "People are basically the same in that we get diseases," Py says. "On the other end of the spectrum, however, we are biochemically unique. What happens, how disease manifests in our bodies differs. Every body is different."
Py’s interest in MCS started when his wife, Jane Sloven, developed asthma. The prescribed treatment meant a lifetime use of inhalers, which Sloven vetoed. Dr. Dan Kinderlehrer, a Newburyport, Mass., internist training in environmental medicine felt he could help. Taking an exhaustive medical history, he addressed Sloven’s food sensitivities, suggesting dietary changes and supplements. He identified chemical sensitivities and said to avoid scented products and chemical fumes. "A lot of her chronic problems cleared up, and she felt great," Py says, which led him to the American Academy of Environmental Medicine. The methodology fit with his philosophy of healing: taking the time to listen to and believe in the patient. "MCS is just one of the manifestations of toxicant-induced loss of tolerance," Py says. "It is diagnosed by sitting down and listening to their story. You have to believe them. Why would anyone want to go through this torture? "People come in whose reality has been invalidated/minimized," Py continues. "I eventually hear, ‘I’ve been all over’… ‘No one believes me’… and I tell them, ‘Yes, you have a legitimate problem with a physiologic basis and we can identify what you are reacting to,’" says Py.
Portsmouth naturopath Leon Hecht recalled the fallout when the EPA carpeted the building. "A percentage of employees became very ill, some of whom didn’t get better," Hecht says. "With chemical injury, you never know when any of us are exposed to something if it is the last straw." An example involved a patient living in a mobile home who was exposed to formaldehyde on a daily basis at levels that initially didn’t cause her any noticeable ill health effects. After several days, however, complaints such as respiratory irritation, headaches and depression came up as tolerance levels were reached. The mobile home was suspected, and the patient moved out thus ending the symptoms. Yet, she developed MCS, says Hecht, and is now unable to tolerate even small levels of formaldehyde such as the amount in permanent press clothing.
What can be done? Patients with MCS experience severe symptoms that interfere with daily life and work. Many significantly alter their behavior to avoid chemical triggers. They withdraw from activities with friends and family to eliminate chemical exposure, they limit travel, leave their job, stop using chemical compounds to clean the home, remove home furnishings, stop using fragrances, change their diet and the type of clothing they wear. Yet, McLellan says, "Living in a glass bubble so you are not exposed to anything is not compatible with normal life. You have to optimize the air quality at home and work." McLellan treats the physiologic conditions including asthma, odor-triggered migraines and depression or panic attacks. And he recommends patients develop "a tool box of coping strategies," which includes appropriate medications, mind-body techniques, cognitive behavioral therapy, and olfactory deconditioning. "There is no strong scientific evidence that proves anyone of these reliably work," McLellan says, explaining that olfactory deconditioning desensitizes people who have specific phobias.
Py says he can help patients lessen and even end their symptoms, but the results depend on how long the patient was exposed, what he or she was exposed to, and what health issues existed before. Most people with a chemical injury are left with some scarring in the body, Py says. The system is never the same. They lose their tolerance and remain sensitive. In order to avoid the things that cause problems, Py asks patients to identify everything that is scented in their life. He also uses laboratory tests to find problems the body has detoxifying chemicals. He checks the liver and urine as an indication to how the antioxidant system is working. Although there is no "cure" for this unrecognized condition, some believe there are "treatments" that can begin to get at the roots of the problem. "We get the body in good shape, peel off some layers – if we take care of mold and dust allergies, cat allergies and improve antioxidant function in the body, (the patient) won’t be as sensitive to chemicals when exposed," Hecht says. Source: Portsmouth Herald. Copyright © 2004 Seacoast Online. All rights reserved.