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   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.

 

 

 

 


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