Heal of Southern Arizona MCS Pages home MCS Hospital Access First Do No Harm, The Challenge of Patients with Multiple Chemical Sensitivities (MCS) By: Ann McCampbell, M.D. Santa Fe, New México This article was written for Emergency Medical Service personnel in New Mexico. It was published in Focus, October 1996, and is reprinted with permission. Prior to 1988, I was a healthy, athletic physician who played drums in a rock band. A year later, I was severely disabled with what is known as Multiple Chemical Sensitivities (MCS). The onset was subtle, with slowly worsening food intolerances, progressing to the point I could only eat three green vegetables. By then I was also having severe reactions to inhaled substances and had developed headaches, fatigue, heart palpitations. abdominal pains, nausea and severe diarrhea. Like so many others with MCS, I could no longer tolerate where I lived and was forced to live outside in my yard, the car, or a makeshift shelter. Despite some improvements since the late 1980’s, I still face food intolerances, malnutrition, and adverse reactions to a wide array of chemicals commonly found in the air, foods, and water of our everyday environment. I go to few places outside my home in order to avoid exposures to cigarette smoke, pesticides, perfume, vehicle exhaust, cleaning products. and other toxic fumes which make me sicker. I still do not know what caused my MCS although I do know that I am sick now and that my illness is real and has been devastating. WHAT IS MCS? Persons who have Multiple Chemical Sensitivities (MCS) experience adverse health reactions following exposure to a wide spectrum of certain chemicals at levels which ordinarily do not affect others. The stimulating agents are found everywhere in our modern world: pesticides, new building materials, new carpets and furniture, glue and solvents. paint. perfume. many personal care products (detergents, fabric softeners, shampoos, hair sprays, mousse, soaps, lotions, and deodorants). tar and asphalt fumes. smoke, cleaning products, disinfectants, vehicular and industrial exhaust fumes, fresh ink, new plastics, and synthetic clothing. Symptoms can be provoked by even minute amounts of substances being inhaled, ingested, or absorbed through the skin. Many with MCS react to mold dust, pollen and animals, and there are significant overlaps between MCS and the syndromes of Chronic Dysfunction and Fibromvalgia, a condition of joint and muscle pain. MCS occurs in people of all ages, races, and socio- economic conditions. Women are affected more frequently than men. Although the exact prevalence of this disorder has not yet been clearly defined, a 1995 randomized study in California found that 16% of the population reported some degree of chemical sensitivities and 7% said they had been diagnosed with MCS. Three physicians in northern New Mexico who treat patients with MCS estimate that collectively, they have diagnosed 1500 new patients in our area over the past two years. The severity of this illness varies greatly, from those with only minimal symptoms (like skin rashes from wearing latex gloves) to a severe and disabling chronic illness which forces people to alter every aspect of their lives. People with MCS often lose their jobs, homes, careers, family and friends because their lives change so drastically. They are unable to go into most buildings and some become imprisoned in their homes where they can establish a safe environment free of the chemicals that cause their worst reactions. The isolation imposed by these chemical barriers and the lack of understanding about MCS contribute significantly to the devastating nature of the illness. Although the medical community has generally been slow to understand or accept MCS as a ‘real” illness, there are some physicians who understand and treat the condition. It has also been recognized as a potentially disabling condition by the federal Social Security Administration, Department of Housing and Development (HUD), Environmental Protection Agency (EPA), and the National Academy of Sciences. The newly-built medical facility in Taos — Holy Cross Hospital — was constructed with rooms designed to accommodate chemically sensitive patients by not only utilizing less-toxic building materials, but also establishing guidelines for staff to refrain from wearing scented personal care products and utilizing less-toxic cleaning methods. CAUSES OF MCS MCS is thought to result from exposures to toxic chemicals, although the exact etiology of MCS is unproven and the mechanism of the illness is unknown. Some develop MCS after a single major exposure while Others seem to develop symptoms slowly following cumulative events. Many of those with MCS report the onset of their illness after moving into a new home or working in recently remodeled offices. Many members of the health care profession have developed this disorder, seemingly after chronic exposure to disinfectants and other chemicals found in hospital and other health care settings. THE SYMPTOMS OF MCS The symptoms of MCS vary greatly and are unique to each person. but the unifying factor is that chemically sensitive people experience the onset and/or exacerbation of the symptoms following exposure to chemicals. The diversity of symptoms and the lack of a clear causative agent has contributed to the bewilderment of medical professionals who, all too often., throw up their hands in frustration and attribute the symptoms to a pure psychiatric problem. The symptoms of MCS run the gamut of all the body systems: headache, fatigue, sleep disturbances, dizziness, heart palpitations, respiratory difficulties, swollen lymph nodes, abnormal taste sensations, impaired circulation, gastrointestinal problems, joint and muscle pain, weakness, loss of coordination, nerve irritations, and even seizures. Many cerebral symptoms can also appear, such as clouded thinking, difficulty in concentration and communicating, memory loss, and feelings of intoxication. Emotional symptoms may occur as well, such as depression. panic attacks, and emotional outbursts. Finally, persons with MCS may have typical symptoms associated with allergies such as itchy eyes, nasal congestion, sinusitis, asthma, hives and other rashes, and even anaphylactic reactions. The onset and severity of symptoms following in an exposure vanes from person to person based on their general state of health, recent cumulative exposures, and other unknown factors. Symptom onset may be delayed by hours or even days from exposure. The duration of an individual’s reaction can also vary from seconds to a few weeks or months. DIAGNOSIS AND TREATMENT OF MCS The diagnosis of MCS is often easy to make but difficult to prove, since there are no agreed upon diagnostic criteria for this disorder. Like other conditions with limited physical and laboratory findings — e.g. headaches — the physician must often rely primarily on reports of the patient’s array of symptoms resulting from environmental exposures. Various tests such as brain scans, immunological studies. enzyme functioning, and neuropsvchological tests have shown abnormalities in many people with MCS, pointing to possible damage to the immunological and central nervous systems. There is no known cure for MCS. but a variety of treatments can help reduce the reactions and improve the overall health of people with the disorder. Avoiding exposure to stimulating chemicals is of prime importance, but not always possible in the environment of modern society. Treatments that have been found to be helpful include nutritional supplements, detoxification techniques, allergy desensitization and correction of hormonal imbalances. Complementary medical techniques such as acupuncture and homeo- pathic medicines have also been found to be effective. Although some people seem to fully recover from MCS, most unfortunately demonstrate a chronic relapsing course characterized by spurts of improvement countered with distressing setbacks. MCS is rarely fatal in itself, but deaths have been known to occur as a result of severe bronchospasm, heart irregularities, and malnutrition. Tragically, suicide is also a factor of morbidity for those with MCS who find their worlds overwhelmingly intolerable due to the pain, isolation, and helplessness associated with this illness. MCS AND EMS What does all this have to do with EMS? Like all people, those with MCS occasionally find the need to access emergency care, perhaps at even a greater rate than others because of their precarious health. But many with MCS have a deep fear of calling for help. Probably the biggest reason for not calling for help is the fear of having a serious, even life-threatening, reaction to an administered drug. They also do not want to worsen their condition by being exposed to ambulance exhaust (especially diesel), perfume, cologne, scented laundry products and cigarette smoke residue emanating from the EMTs and various emergency equipment such as plastic oxygen masks, intravenous fluids in plastic bags and latex gloves. People with MCS also worry about being transported to a hospital against their will. Another element of concern has more to do with the sometimes insensitive approach of health care providers when faced with an MCS patient. Although many EMTs have been reported to be kind, courteous and respectful of MCS patients, others have been rude and ready to assume the person they are treating is “crazy”. These fears within the MCS community have unfortunately led patients to prolong calling for help through 911 until their condition has deteriorated drastically. Knowing how to provide emergency treatment to a chemically sensitive person who is in active distress is admittedly difficult and presents a great challenge to the EMT. The most important thing for an EMT to do is to listen to the patient, accept what they are saying, and respect their limits. This, of course, has to be balanced with providing life-saving measures as taught in EMT training and authorized through treatment protocols. Bear in mind, too, that MCS patients may have difficulty communicating verbally if they have been, or continue to be, chemically exposed. The following are the important issues for the emergency treatment of MCS patients who access EMS: • Listen to the patient — reassure patients that you understand they are chemically sensitive and that you will work with them in providing care. Continually communicate with them regarding their environment, the treatments you plan, and respect the patient’s limitations in possibly refusing some interventions. • Because vehicle exhaust fumes are so toxic, use all methods to minimize exposure to patient — ideally avoid idling of the ambulance at the scene of an emergency response. At least turn off the motor when loading and unloading a patient, and close the windows to reduce fumes entering the vehicle during transport. This should be a practice with all patients. • Refrain from wearing perfumes, cologne, or other strongly fragrant products while on duty in the closed space of an ambulance compartment, the over-powering scent of fragrance can be extremely hazardous to an MCS patient. • Refrain from smoking while on duty or wearing clothes that have smoke residue. (If you must smoke please do it in an open area so that residue does not accumulate.) • Remove patients from hostile environments — as with hazmat protocols, remove the patient from the source of danger by moving them out of offices. stores~ theaters. etc., and into fresh air whenever possible. Quickly remove patients from areas of gasoline spills or leaks, smoke, and exhaust fumes~ This measure alone, which is good practice will all patients. may improve the patients ability to communicate with you. Use the patient’s own medical equipment whenever possible — some patients with severe MCS have their own air filters, oxygen tubing. ceramic face masks, and toxic-free sheets/towels which should be used in lieu of similar equipment on the ambulance, with the patient’s permission. If the patient desires to take his/her own medicine — such as vitamins sublingual antigens or homeo- pathic medicines, contact medical control for advice and concurrence to allow the patient to self- administer those agents. • Intravenous fluids in plastic bags may be harmful ideally, those with MCS should receive i.v. solutions from glass bottles, but since these are not standard on ambulance vehicles because of safety concerns, consider that an i.v. may not be best for the patient unless critically life-threatening conditions exist. Also, avoid glucose solutions if possible and use isotonic solutions. • Avoid the use of drugs if possible — there needs to be a balance between what is life-saving and what may potentially harm a patient. MCS sufferers are often sensitive to many drugs and preservatives. Listen to the patient’s concerns, history of reactions to medicines, and contact medical control for advice on administration of any medication. • Avoid use of latex gloves whenever possible — it is understood that universal precautions are of great importance to EMT care, but if alternatives to latex gloves are available, these should be used. There are scores of other suggestions that may improve the EMS environment in treating MCS patients. such as cautious use of disinfectants in the vehicle, hypo- allergenic tapes and dressings, and the cleaning practices for linens and towels. Details on these factors can be obtained by contacting Barak Wolff, MPH., (505) 827-2389, or Ann McCampbell, M.D., (505) 466- 3622. It is unfortunate that most MCS patients do not wear identification bracelets that would notify the EMT of their condition, but many MCS patients are unable to wear metal bracelets due to allergies and sensitivities. Hopefully, a standardized method of identification can be developed in the future that will be helpful for emergency providers and patients alike. In summary. MCS is a serous and complex illness that is poorly understood by most health care providers People with MCS may have to access emergency services because of an exacerbation of their MCS symptoms or from an unexpected accident. In either case, it is important for EMTs to be familiar with MCS so that care can be balanced between what is life-saving and appropriate versus what can actually produce more harm to the patient. Listening to the patient, keeping an open mind, and being flexible within guidelines goes a long way towards making it a positive experience for all involved. Utilizing direct medical control when conflicts arise between standard emergency practices and the wishes of an MCS patient arc of utmost importance. As more is discovered in the future about this complicated disease EMS will undoubtedly adjust its protocols to provide better procedures and treatments for MCS patients, while continuing to strive to “do no harm.” THE STORIES OF MCS Those who have MCS often face complex challenges that the populace at large will never experience. In the stories of chemically Sensitive people in my community, their tales begin to show the faces of real people. When K.T. developed MCS, neither she nor her doctor understood what was going on. She experienced a frightening series of events when she was admitted to a hospital to readjust the level of medications she ~ taking to deal with the anxiety and insomnia associated with her MCS. The hospital environment, especially the perfume and cigarette smoke, produced more serious reactions and an evaluation by a staff psychiatrist interpreted her behavior of trying to avoid them as “anti- social tendencies” Against her wishes, she was transferred to a county psychiatric facility, but by the time she arrived there, her thinking had cleared so completely that she was considered not appropriate for admission. However, problems developed with the legal processing of her discharge and she was forcibly detained for three days until her brother could manage her release. She describes this experience as “a total nightmare.” When roller-skating, S.S. accidentally fell and fractured her wrist. She told the responding EMTs about her severe MCS and instructed them not to give her any medicines, but she was not reassured that they would comply. In the hospital’s ER. she attempted to communicate the same history to the doctor but was treated as if she was paranoid, or hysterical. In addition, the emergency doctor refused to call her private physician (who was familiar with her chemical sensitivities) to get advice on how to treat her. When R.T. accidentally ingested concentrated hydrogen peroxide, a call to the Poison Control Center initiated a 911 response. When the medics arrived. R.T. was vomiting repeatedly and unable to clearly describe her history and her fear of reactions if she was exposed to harmful chemicals in the ambulance and hospital Luckily, a neighbor, who was also chemically sensitive. was available and advocated for RT.. including advice that the EMTs not use the plastic oxygen mask and try to limit R.T.’s exposure to vehicle exhaust and their cologne. She had a less harmful transport to the hospital after this information was shared and accepted. A 43 year old woman, J.C., became ill after working in an office that was undergoing major remodeling. The installation of a new carpet produced extreme fatigue. dizziness, trouble thinking, and difficulty in speaking. Since then, she has been disabled and unable to work. She now needs to use air filters in her home and car, and frequently must wear an industrial respirator when she goes out. If she catches a whiff of perfume, she feels like “someone hit me across the head with a baseball bat.” A 44 year old man, C.L., has been forced to move numerous times in the past three years in an effort to find living accommodations that are free of formaldehyde-containing building material. This agent is commonly found in particle board, plywood, and carpeting. Exposure to formaldehyde produces foggy thinking and memory loss so severe in C.L. that he is unable to balance a checkbook or read a book. He also suffers from fatigue, depression and severe digestive problems. The physicians he has gone to for care have not helped with either a diagnosis or effective treatment of his illness. Dr. McCampbell can be contacted at (505) 466-3622 or drannmcc@aol.com In summary, MCS is a serious and complex illness that is poorly understood by most health care providers.

Guidelines to prepare for planned or emergency medical care. Dr. Mc Campbell, who is a medical adviser for HEAL of Southern Arizona, has these suggestions to supplement the advice in the HEAL of S AZ Hospital packet. . You should have an emergency packet that includes glass IV bottles containing normal saline or half normal saline. These are available from Merritt Pharmaceutical and are good for a couple of years. • Use any drug in a small dose and go slowly. If you have tolerated a drug before, it’s probably OK. In an emergency, if the patient is unconscious, you will have to depend on the usual medical treatments. • If possible, have someone with you to advocate for you a family member or a chemically sensitive friend. • If you need hospitalization, talk to a physician with whom you have a good rapport. Ask him/her what procedures and medications will be used. If possible, also consult a physician who specializes in environmental medicine. • Since individual tolerances vary, medications that might be used should be tested using an electro-diagnostic machine, pendulum, muscle testing, etc. • Most emergency Rooms have an isolation room (or an infection room) that has its own air handling system. Ask to be put in this room, if possible. • When you are sick or have an emergency, you’ll do the best you can and it will probably be OK. OK.