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The Health Care Challenge in Multiple Chemical Sensitivity

 

 

 

 

by Pamela Reed Gibson, Ph.D.
James Madison University

 

Originally part of an article named 'Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living'.

 

Obtaining medical care for the person with MCS can be a severe struggle for a number of reasons. Most medical, psychiatric, and rehabilitation facilities are inaccessible to people with this disability and health practitioners are usually uninformed about the condition. The conventional medical community has not recognized MCS, and has even attempted to censure and intimidate those physicians who do attempt to work with people with this problem. There is no training regarding MCS in medical schools, therefore, most physicians are unfamiliar with it. There is, however, a branch of medicine that does treat MCS. The work of Theron Randolph (mentioned in the previous section) evolved the field of Environmental Medicine. Randolph did groundbreaking clinical work and found that many of his patients were allergic/sensitive to heating fuels, gas cooking emissions, and other environmental pollutants. He was then able to train other physicians and is the mentor of many of the environmental physicians practicing today. Some people with MCS seek help from these practitioners, although they are sparsely located and can be very expensive. Many with MCS report great benefit from this approach to treatment.

The field of environmental medicine espouses several basic concepts that can be helpful if you work with people with MCS or electrical sensitivities. Chemical sensitivity is seen as developing in two stages that of induction and then triggering. In induction, one large chemical exposure, or perhaps an ongoing more moderate one can damage the nervous system and/or immune system causing the person to become sensitized to the chemical in question. Persons with electrical sensitivities report that the condition seems to be initiated in much the same way - with a significant exposure to electromagnetic radiation or fields. Further exposure to that substance then triggers symptoms (the triggering phase). If a person with MCS is exposed to one substance at a time it is fairly easy to determine cause and effect. But if the person has multiple exposures, simultaneously or back to back (which is often the case), it is very difficult to pinpoint what is causing the reaction and the person just feels bad continually. This is called masking. If a person lives in a house that is not safe for him or her, there will be continual symptoms, but their relation to the house may not be clear. The way to unmask is to stop the exposures. The person whose home is in question can go to a safer locale for 4-5 days. Upon return to the home, the symptomatic reaction is then likely to be very dramatic if the home is not safe. Although this is uncomfortable, it is one way of identifying unsafe triggers. Because MCS tends to demonstrate the spreading phenomenon where sensitivities develop to other chemicals in the family of the original sensitizer and then to unrelated exposures, the person is faced with a repeated need to sort out the sources of his or her adverse reactions.

Another important concept of environmental medicine is called total load. The total load concept says that your body can only tolerate so many exposures before it reaches its limit, "filling up" with too many irritants. Patients of environmental medicine are urged to keep their exposures to chemicals, allergic foods, electromagnetic fields, microwaves, molds, and other inhalant allergens to a minimum in order to minimize stress on the body. Avoiding exposures is seen as being the best method of improving health. Patients are encouraged to clean up their homes and to create a special "oasis" in their bedroom where their exposures will be as minimal as possible in order to have a place to clear out and heal after receiving outside exposures. The oasis should be sparsely furnished with no carpeting, pesticides, petrochemical heat, fresh paint, mold, dust, or books, and perhaps even no clothing to minimize dust. Ideally, bedding should be all natural, but many people with MCS have been able to tolerate aired out camping mattresses. People with electrical sensitivities are urged to avoid electromagnetic fields and shield themselves from those that cannot be eliminated (e.g., many shield their computers). Their bedrooms should have no fluorescent lighting, computers, clocks, or other electrical appliances. When going out in public some people with ES wear ear protectors or even helmets or aluminum foil on their heads to protect against magnetic fields.

Practitioners of environmental medicine use testing techniques that conventional physicians consider controversial. In provocation/neutralization testing the person is challenged with very small amounts of various triggers (foods, chemicals, molds) either subcutaneously (under the skin) or sublingually (under the tongue), and symptoms are elicited right in the medical office. A diluted dose of the same antigen is then used to neutralize the reaction. People who have fairly stable reactions (that is the amounts of antigen needed to neutralize do not change often) are seen as good candidates for P/N testing and neutralization.

Some drawbacks of environmental medicine are that these practitioners are expensive and sparsely located. Note that even these practitioners may not use the diagnosis of MCS or ES. Because of the lack of general acceptance by the insurance industry for the conditions, they may list other diagnoses such as asthma or porphyria, in order to obtain reimbursement. They may also want to avoid controversy due to the harassment that is often directed toward physicians who work with people with MCS and electrical sensitivities.

Most people do not have an environmental medicine practitioner easily accessible to them and must primarily depend on conventional doctors. Finding one who will seriously consider chemical sensitivities is not an easy task. Even if a person does locate a cooperative practitioner, often the office is inaccessible due to the presence of petrochemical heating systems, pesticide use, perfumes on medical personnel, unsafe building materials, and, for those with electrical sensitivities, cellular phones, fluorescent lighting, and electrical equipment. Consequently, people not only lack treatment for their sensitivities, but are forced to neglect routine and preventive care that others in an industrial culture take for granted. This includes routine check-ups, mammograms and dental cleanings. Consequently people with MCS are at risk for other health problems that could be better treated if detected early. In addition to the inaccessible office, chemically sensitive people have the realistic fear of having adverse reactions to medical treatments such as anesthesias, medications, dyes used in x-ray testing, and others. People therefore tend to avoid dental procedures, elective surgeries, and any invasive testing. One woman in my study chose to suffer for two years with an abscessed tooth rather than be exposed to anesthetics. Others told me that they went without anesthetics for procedures that really need them such as having cysts removed, having root canals and teeth pulled, and invasive tests.

People with electrical sensitivities avoid medical treatment because they also are likely to be so harmed by the exposures (in this case to the electrical equipment) that the visit isn't worth the risk. In addition, their symptoms may be altered completely if they are observed while exposed to electrical fields. So people with MCS or ES are having a hard time getting any medical care, even that unrelated to their sensitivities.

The flip side of the lack of care, however, is often a desperate search by people with MCS and ES for answers and treatment for their sensitivities. People experiment with both conventional and alternative therapies. Many deplete their finances and even incur debt paying for treatments that are not helpful. The 917 people in my recent treatment study had seen an average of twelve health providers, but described only three as helpful. They had spent an average of $51,000 on total health care since their illness began, $7,000 of it in the past year. This amounted to over one-third of their annual personal income going to health care costs.

Respondents had used an average of over 30 treatments. People who were more disabled had tried more treatments than those more mildly affected. People tended to use about 10 nutritional supplements, several environmental medicine techniques such as creating an oasis or safe living space, and 2 or 3 different therapies in each of the categories of holistic therapies, body therapies, and prescription items. Respondents saw creating a chemical-free living space, chemical avoidance, and prayer as being the most effective interventions. Both creating a chemical free living space and chemical avoidance were rated by 95% of people as helpful. Other therapies rated as highly effective included rotation diet, air filters to reduce exposures, personal oxygen to cope with exposures, acidophilus supplements, acupressure, touch for health, reflexology, moving to a safer location, and meditation (Gibson, Elms, & Ruding, 2001).

Many people with MCS experience harm from medical care due to unnecessary, inappropriate, or delayed medical treatments. People in my research were given inappropriate drugs, had long delays in diagnosis, were treated for the wrong conditions, were given unnecessary invasive medical tests, had one or more unnecessary surgeries, and were even inappropriately given shock treatments.

Mental health practitioners were not any more helpful. Although 70% of my survey participants saw mental health providers, most of these providers were reportedly not helpful. To the contrary they often caused harm by ignoring patients' chemical sensitivities, inaccurately giving psychiatric labels, drugging people, or suggesting psychiatric hospitalization. And 15% of those who saw mental health providers were actually hospitalized. They suffered further harm from exposures to chemicals and EMFs in the institutions and had to deal with the loss of life control imposed by the psychiatric system. People with electrical sensitivities may have an especially difficult time in psychiatric institutions given the stereotype of the mentally ill person complaining about radio waves. Persons with ES will likely be ignored when they ask their doctors to turn off cell phones, motors, and other equipment, as will people with MCS who ask not to be exposed to perfume, cigarette smoke, pesticides, and cleaning products.

Finally the person with MCS or ES has to face that there is no real cure for their sensitivities. Although some treatments are rated fairly highly, they usually only help reduce but not eliminate symptoms. The treatment studies suggest that most treatments actually help no more that about 25% of people and cause harm to others. That is, there is no magic bullet for MCS. Some treatments are in fact consistently rated as being more harmful than helpful by people with MCS. Psychotropic drugs such an anti-depressants as well as anti-anxiety medications like valium are rated poorly. In general the non-toxic, less intrusive therapies are rated better than any chemical therapies or very expensive "designer" nutrients. But people should consult the studies, talk to their doctors, and make their own decisions as to what to try. Repeated unsuccessful interventions can be a costly and demoralizing experience. As hard as it may seem, one should always keep in mind that a new therapy may not work. This is not always easy when a situation seems desperate, as is often the case. Consequently, I've seen many people go into debt to try new and expensive treatments, only to become sicker from the process and be financially drained besides.

People with MCS have different philosophies as to whether sensitivities are permanent or not. Some believe that there is a treatment out there for them and they just need to find it. Others believe that there is no real cure for MCS, and that simply trying every therapy that comes along is a waste of time, energy, and money. This group tends to believe that one has to accept MCS as a long-term disability and learn to live with it. This doesn't mean that they give up or stop judiciously trying to improve. But they believe that the desperate search for a cure is a distraction from adjusting to having a disability. Accordingly, by the time some people come to the Center for Independent Living for help, their enthusiasm for medical treatment may have waned. As their advocate you will have to respect the persons' right to choose what treatments to pursue.

 

 

Related Articles:

 

HOW TO HELP

  • Collect and share names of any supportive physicians who have helped other people with MCS or electrical sensitivities. If people want to find a practitioner of Environmental Medicine they can contact the American Academy of Environmental Medicine for a practitioner near them. American Academy of Environmental Medicine (AAEM), American Financial Center, 7701 East Kellogg, Suite 625, Wichita, Kansas 67207. Phone: 316-684-5500. Web site: www.aaem.com
  • The Chemical Injury Information Network (CIIN) can provide a list of physicians that work with people with MCS. The list includes practitioners of Occupational Medicine, Immunotoxicology, Environmental Medicine, and other specialties. CIIN can be contacted at PO Box 301, White Sulphur Springs, MT 59645. Phone: 406-547-2255. E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.. Web site: www.ciin.org

 

Books on Environmental Medicine

The basic tenets of Environmental Medicine are explained in T. G. Randolph, and R. W. Moss. 1982. An Alternative Approach to Allergies. New York: Harper & Row. The book describes Randolph's work with chemically sensitive patients as early as the 1950s and includes many case studies.

Books by Sherry Rogers, M.D.: From Prestige Publishing, P.O. Box 3161, Syracuse, NY 13220:

Rogers, S. 1986. The EI Syndrome. Syracuse, NY: Prestige Publishing.

Rogers, S. 1990. Tired or Toxic? Syracuse, NY: Prestige Publishing.

From Phillips Publishing, Inc., 7811 Montrose Road, Potomac, MD 20854. 1-800-301-8970.

Rogers, S. 1997. Are Chemicals Making Me Sick? A Primer on Chemical Sensitivity.

Rogers, S. 1997. Dr. Rogers' Solutions to Common Medical Problems.

Rogers, S. 1997. Why Am I So Tired? Dr. Rogers' 60-Day Plan to Boost Your Energy. From SK Publishing, P.O. Box 40104, Sarasota, FL 34242. Phone: 1-800- 846-ONUS:

Rogers, S. 1994. The Scientific Basis for Selected Environmental Medicine Techniques.

Rogers, S. 1997. Depression: Cured at Last.

 

Detoxification

The following book by an environmental physician is a comprehensive guide to detoxification:

Krohn, J., F. A. Taylor, and J. Prosser. 1996. The Whole Way to Natural Detoxification. Point Roberts, WA: Hartley & Marks.

  • Share the following 4 treatment studies.

Gibson, P. R. (2000). Treatment data reported in chapters 6 and 7 of Multiple chemical sensitivity: A survival guide. Oakland, CA: New Harbinger Publications.

Gibson, P. R., Elms, A., & Ruding, L. (2001). Self-reported treatment efficacy in 917 persons with multiple chemical sensitivity. Paper presented at the Chemical Injury Information Network MCS Conference, August 13-15, Sante Fe, NM.

Johnson, A. 1996-1998. MCS Information Exchange Newsletter. November 8, 1996; March 20, 1997; September 19, 1997; February 13, 1998.

Brunswick, ME: MCS Information Exchange. MCS Information Exchange, 2 Oakland Street, Brunswick, Maine 04011.

Leroy, J., T. H. Davis, and L. A. Jason. 1996. Treatment Efficacy: A Survey of 305 MCS Patients. The CFIDS Chronicle: Winter, 52 53.

 

Acknowledgements

 

 

Amazon.com Recommended Books:

 

Chemical Exposures: Low Levels and High Stakes, 2nd Edition

Chemical Exposures: Low Levels and High Stakes, 2nd Edition

 

Buy from Amazon.com

Buy from Amazon.co.uk

 

Defining Multiple Chemical Sensitivity

Defining Multiple Chemical Sensitivity

 

Buy from Amazon.com

Buy from Amazon.co.uk

 

 

Multiple Chemical Sensitivity: A Survival Guide

Multiple Chemical Sensitivity: A Survival Guide

 

Buy from Amazon.com

Buy from Amazon.co.uk

Detoxify or Die

 

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