The Dilemma of Medical Help
If the Treatment Doesn’t Kill You
The sociologist Michael Bury (1982) said the following about getting medical help for chronic illness:
“The realization that medical knowledge is incomplete, and that treatment is based on practical trial and error, throws individuals back on their own stock of knowledge and biographical experience. The search for a more comprehensive level of explanation, a more certain basis of coping with the illness is often a long and profound one.” (p. 174)
If disillusionment with the help-seeking process is a normal part of dealing with “established” illnesses, getting help for MCS or EMS is even harder. In Phase II of my research, participants who provided medical care information saw an average of 8.6 medical practitioners. Of these practitioners, only 27 percent were described as being helpful. Respondents had spent an average of $5,784 on medical care in the previous year, and an average of $34,783 over the course of their illness.
More than one-quarter of the participants still did not have a doctor who was knowledgeable about chemical sensitivity. Because few physicians receive adequate training in toxicology or environmental causes of disease, few are prepared to help those with environmental sensitivities. Perhaps this is why so many people with MCS are self-diagnosed. For example, in Phase I of my study, 47 percent were self-diagnosed. physicians diagnosed 32 percent, other professionals identified 1.3 percent, others with MCS diagnosed 3.3 percent, and 13 percent reported that their diagnoses were made by a combination of methods. The additional 3.4 percent of respondents did not answer the question.
In addition to physicians’ lack of training, chemical and electrical barriers in offices often make it impossible even to meet with a medical practitioner. People with sensitivities frequently do not seek help even for problems unrelated to the sensitivities because of barriers such as perfumes on medical personnel, pesticides in offices, petrochemical heating systems, and, for some, electrical equipment. Also, they often cannot tolerate the prescribed treatments. Of the 187 respondents in Phase III, twenty-eight said they avoided general dental work, twenty-five avoided medications, eighteen did not have recommended surgeries, and fifteen refused diagnostic tests. One woman said she reacted so badly to dental anesthetics (even local applications) that she felt forced to suffer from an abscessed tooth for two years.
Some participants reported enduring painful diagnostic medical procedures, such as bronchoscopy, cystoscopy, and colonoscopy, without the use of anesthetics. Other respondents reported using only local anesthesia for the removal of breast implants and skin tumors, and bladder and hernia repair.
Many respondents dreaded medical emergencies because they feared that the treatments administered would make them even sicker. In fact, this is exactly what happened in several instances. People reported that medical alert warnings clearly stated on official bracelets or necklaces were ignored; physicians administered medications and treatments to which patients had previously reported sensitivities; and reactions were not taken seriously and/or were seen as psychosomatic.
Many respondents believed that they had suffered iatrogenic harm (harm caused by medical intervention). People described enduring harm from drug effects, delay in diagnoses, treatment for incorrectly identified conditions, invasive medical tests, unnecessary surgeries, and electric shock treatments.
One woman describes becoming addicted to medications:
“In 1980, I went to a psychiatrist who put me on both tranquilizers and antidepressants. I became addicted to the tranquilizers and it took me eight years to wean myself off. . . . I still get angry when I think how they just didn’t listen to me and made me feel guilty for being sick. I believe they therefore caused my physical injury and made my illness worse.”
—Fifty-nine-year-old woman with MCS
Here are some other comments regarding respondents’ feelings about their interactions with the medical establishment:
“I choose my eye doctor, dentist, lawyers, etc., by the odors in their offices.”
“After going to doctors of environmental medicine, allergists, rheumatologists, family doctors, internists, I gave up on doctors. They can do nothing for me.”
A great number of respondents’ frustrations seemed to be the result of having had even life-threatening symptoms continually ignored or misinterpreted. For example, when one woman became unconscious from a reaction to hair coloring, emergency room physicians suggested that she was a drug addict. Other people with MCS had comments like these:
“For two years, between ages fifteen and seventeen, all that doctors would tell me about my problems was that ‘adolescent girls have these symptoms’ and they offered no help.”
—Twenty-four-year-old woman with MCS
“When no disease could be found by my gastroenterologist, he told me that he had patients a lot sicker than I am who had ‘learned to live’ with their symptoms.”
—Woman living with MCS for eight years
“Over the years, I have seldom received treatment of any sort. Doctors did not take my complaints seriously and would send me away with the assurance that there was nothing wrong with me. So I continued getting sicker and sicker believing everyone felt as I did—only I was a weakling and a whiner for not coping like everyone else. I believed this even when I would get up in the morning and faint, when my throat would bleed for months at a time, when I had constant fevers and swollen lymph nodes for years. Why? Because doctors said there was nothing wrong with me.
—Thirty-six-year-old woman with MCS
Some patients actually were refused treatment and sent away by physicians. An allergist told one woman who had struggled with MCS for twenty-two years that people’s bodies just didn’t do the things she described. When she reacted to the allergy testing, the allergist got angry with her and told her not to come back.
In some cases, physicians balk at seeing chemically injured patients who may become involved in lawsuits. A woman injured when a gallon of air freshener was accidentally spilled in her car said:
“When I told the first doctor what had happened to me he refused to examine me. He said he didn’t want to get involved and he wouldn’t charge me for the visit. I told him if he would examine my nose he would probably see physical evidence of my injury. He did this and noted that there was abnormal redness and fluid in my ears. Quickly, he said, ‘But these are symptoms of a cold and I’m just going to write down that you have a cold.’”
Swearing Off Medical Treatment
For the most part, good medical care is not available to people with environmental sensitivities in the conventional medical community. This has led some participants to swear off medical care entirely. One woman said, “I’m not happy about donating my body to science while I’m still alive, so I don’t.” Another said, “All the doctors I went to had not even heard of chemicals or pesticides hurting a person. I haven’t found a doctor who even wanted to get involved. They all thought I needed a psychologist. I haven’t been to a medical doctor in seven years.”
Blind Faith Will Not Get You Good Treatment
Clearly, MCS patients are not receiving good care from the medical profession. Given the costs involved and the possibility of being harmed by inadequate medical care, one of the worst things people with sensitivities can do is go trustingly from provider to provider, passively accepting treatments, and hoping that something will work. Here is a testimony from someone who tried to be a “good patient”:
“The original otologist [ear doctor] had me tested for depression (I was not [depressed], but severely stressed.) The psychiatrist suggested a few ‘talk sessions’ and I readily agreed; however, he demanded I take an antidepressant (which put me to sleep at the wheel and I drove the car off the road!). He informed me he knew nothing about tinnitus or MCS, but said that if I was going to get well it would be there in his office. I laughed all the way home and didn’t look back. The second otologist suggested I be put on Prozac and monitored; I began having violent headaches, nausea, and vertigo to the point where I couldn’t get out of bed. The psychiatrist was supposed to be keeping careful check on me and [during his] last visit he admitted he never had a tinnitus patient and knew nothing about it. Ceasing Prozac eliminated all adverse effects. So, you can’t say I’m not a cooperative patient with faith in my doctors; however, I have changed my attitude and now assume as much responsibility for my health as possible.”
—Sixty-one-year-old woman with MCS
Sometimes loved ones or primary care providers suggest that you go to a famous clinic to find out what is wrong with you “once and for all.” One woman who had been sick for ten years spent her life savings doing this:
“In 1987, I got a real bad reaction (swelling in my shoulder and back, chest pains, and other symptoms). I went from doctor to doctor. One doctor did a mylegram and injected dye into my spine. I had a bad allergic reaction to the dye, but the doctor didn’t understand what was going on. [She p]ut me on heart medication to stop my heart from skipping beats and other medications for swelling. [I] felt really doped up from all that. Finally, a rheumatologist sent me to the . . . Clinic. Their results showed nothing too much out of the ordinary. They could not find the cause of the dent in my head, swelling and all the other symptoms. At the end of my visit, I was upset that they could not help me. I believed it was my last hope. I used up our savings to go to the clinic. . . . Their reply was that I hyperventilate and I should come back in three years. That was very depressing. I have not gone to a medical doctor since.”
Practitioners of conventional medicine are unlikely to receive good guidance from their profession any time soon. For example, although the Merck Manual now lists MCS (Merck Manual Second Home Edition, Chapter 306), the listing is noncommittal about whether the condition is physical or psychogenic.
It is possible that people with MCS have tried more remedies and treatments than any other group in the world. When you are left out of conventional medicine you tend to experiment. Some people have found relief with alternative treatments, including herbs, bodywork, and meditation. I collected data in 1993 on a number of treatments tried by people with MCS. This chapter deals with conventional treatments. See chapter seven for descriptions of alternative treatment options. For an updated study of 917 people, see Appendix E.
Alison Johnson conducted an excellent three-year study (from 1996 to 1998) on treatments for MCS by asking 351 people to rate over 160 different treatments. She distributed her findings and periodic updates in newsletters that included both quantitative data and in-depth discussions of a number of treatments. Respondents were asked to rate therapies as “effect unclear,” “harmful,” “didn’t help,” “slight help,” “major help,” or “enormous help.” Few therapies helped more than 25 percent of the participants who tried them. Avoidance based therapies, however, were much more positive (with 95 percent of respondents rating avoidance as a “major” or “enormous” help), and some other therapies were rated fairly high as well.
Johnson’s research is the largest study of treatments done to date, and although she is no longer collecting data, you can purchase her results. (See Appendix C for chapter resources and further reading.)
LeRoy, Davis, and Jason (1996) also conducted a formal study of treatments. Treatments that rated highly and had low rates of harm included chemical avoidance, creating a safe space, moving to a cleaner area, education, support groups, establishing connections with other MCS people, and meditation/relaxation.
Although there is no way of knowing whether the respondents in each of these studies represent all people with chemical sensitivities and injuries, self-identified samples such as these and clinical samples from physicians’ offices are the only groups that have been studied to date with respect to treatment. Both of the studies suggest that although each treatment helped some of the people who tried it, the risk of worsening was present with almost all of them.
The highest harm ratings were reported for drugs and magnet beds. (Magnet beds were rated harmful by 60 percent in the Johnson study).
Here are the harm ratings from the Johnson and LeRoy studies for several drugs.
Johnson LeRoy, Davis, and Jason
Drug % Rated Harmful % Rated Harmful
Elavil 52 52
Prozac 56 56
Zoloft 53 56
Wellbutrin 55 67
Sinequan (doxepin) 67 59
Imipramine (Tofranil) 50
MAO Inhibitors 75
The antifungal drugs did not fare too well in either of the studies. Although they were rated as helpful by a significant number of people, the harm ratings also were high.
Johnson/LeRoy Johnson/LeRoy Johnson/LeRoy
Drug % Slight Help % Major/ % Harmful
Nystatin 30/28 27/22 19/23
Nizoral 21/21 30/19 29/34
Diflucan 22/26 41/31 14/14
The removal of tooth fillings that contain mercury often is discussed as a way to improve health by reducing the body’s exposure to metallic elements. Of 151 people in Johnson’s study who had had their mercury amalgams removed, forty-two said that the effect had been unclear, nine rated it as harmful, and twenty-four said it was no help. Conversely thirty-five said removing their fillings was a slight help, twenty-five said major help, and sixteen said it was enormous help. Some respondents in Phase I of my research reported getting sicker from mercury amalgam removal, probably because of inhaling and swallowing mercury in the process. Although some people do seem to get better from this procedure (some even immediately), it is expensive and carries many risks, including having teeth cracked during drilling, reacting badly to anesthesia and replacement dental materials, and temporarily increasing one’s mercury exposure.
How Is MCS Treated?
Despite routinely difficult searches for helpful physicians, the majority of participants in Phase I of my research felt that they had finally found doctors who were knowledgeable about chemical sensitivity. Although these practitioners were not all well-known experts, they took an interest in and had some knowledge about the problem. These patients saw practitioners in clinical ecology/environmental medicine (37.7 percent), general practice (11.5 percent), homeopathy (6.6 percent), chiropractic medicine (5.6 percent), occupational medicine (4.3 percent), psychiatry (2.6 percent), and immunotoxicology (2.3 percent). An additional 29.4 percent of respondents did not answer this question. A small number of respondents found that some primary care providers also were open to learning about MCS.
“My new primary care doctor is very interested in learning more about chemical sensitivities and welcomes the articles that I give her. She is receptive to working with me and is one of the few doctors who didn’t want to send me packing out of the door because they didn’t know what to do with me.”
—Thirty-six-year-old woman with MCS
Probably the largest group of physicians to treat MCS is in environmental medicine. Although practitioners in occupational medicine have been seeing workers poisoned by chemicals for many years, treating people who react to low-level chemical exposures is the specialty of those in environmental medicine. The basic tenets of environmental medicine are summarized briefly in this chapter and in chapter one. (See Appendix C for further reading.)
In Phase I of my study, many people reported visiting practitioners of environmental medicine (referred to in the study as “clinical ecology”). Of these, 41 percent said it was of great benefit, 30 percent reported moderate benefit, 17 percent said the visit was mildly beneficial, 7 percent reported no benefit, and 5 percent reported adverse reactions.
Avoiding Chemical Exposure
According to my studies, avoiding chemical exposure is clearly the most effective intervention for MCS. Environmental medicine practitioners prescribe chemical avoidance to reduce symptoms, prevent worsening of the condition, and allow the body to heal. People with sensitivities are urged to avoid all foods, molds, inhalants, and chemicals to which they react. In addition, they are encouraged to avoid chemicals that commonly cause other chemically sensitive people to become sick. Frequently, MCS reactions extend first to substances similar to your triggers, then to all different kinds of chemicals. Sensitivities also frequently extend to natural substances like food, mold, and pollens. This process is commonly referred to as the “spreading phenomenon.” For example, if you become sensitive to natural gas, you are likely to become sensitive to similar hydrocarbon petrochemicals, such as propane. Similarly, if one perfume makes you sick, looking for one that doesn’t is usually futile because the chemicals used are often the same or very similar. Seventy-four percent of the people in Phase I of my study labeled avoidance as having “great benefit” and not one respondent reported having adverse reactions.
The concept of total load is important in environmental medicine because it says that the reaction you have to a pollutant on any given day depends upon the total amount of exposures your body is being forced to deal with at that point in time. The idea is that you might be more likely to have a reaction to an exposure if you are already weakened from other loads on your body, such as prior chemical exposures that day, inhalant allergies, nutritional deficiencies, reactions to ingested foods and drugs, hormonal imbalances, etc. Some have likened the total load concept to a container (the body) literally filling up or being weighted down with exposures until it can take no more. Another way of understanding total load is by using Rogers’ (1986) analogy of a person with MCS setting out in a boat with a number of marked boxes that include traditional inhalant and food allergies, chemical hypersensitivity, newer mold allergies, phenol sensitivity, candida, nutrition, hormone hypersensitivity, heavy metal poisoning, stress, patient compliance (although some see this as a patient-blaming concept), and other miscellaneous factors. If the boat starts filling up with water, the number of boxes the MCS person must throw overboard depends on where the leak in the boat is. The lower the leak, the more boxes you have to jettison to float high enough to survive.
This may be why some people are able to get well by taking care of only one or two chemical factors (analogous to throwing only a little weight overboard), while other people must address them all. Only the very worst people have their leak located along the keel. Even if they throw overboard all twelve boxes and get rid of their entire total load, they still will continue to take in water and proceed to sink unless they are taken to a dry dock for a repair job. This dry dock is analogous to the environmental unit (Rogers 1996, 481).
The Environmental Unit. The environmental unit is for people who are reactive to so many substances that they cannot determine their specific sensitivities, or who are so sick that they need, as Rogers says, to be taken to “dry dock.” The environmental unit is a place where the environment can be completely controlled and monitored and specific sensitivities determined. The first environmental unit in the United States was established by Theron Randolph in Chicago, but it is now closed. To my knowledge, at this writing, there is no inpatient environmental unit for patients with MCS in the United States. A unit has been built in Canada, and there are a number of outpatient clinics in the United States that operate only during the day with patients staying overnight at hotels or residing with former patients who rent safe rooms.
When inpatient environmental units existed, standard procedure was to allow patients to live in a clean environment for a few days so that their reactions could be “unmasked.” During this time, patients fasted on tolerated water. Following this, patients were tested for safe waters, foods, and finally inhalants (molds, dusts, pollens), and chemicals. Progress was slow, as foods were initially eaten only one per day until several safe foods had been identified. These safe foods were then rotated. When patients finally returned home, they may have received from the clinic neutralizing drops for foods, inhalants, chemicals, and/or hormones that helped them to better tolerate some exposures. After unmasking in any unit, it is best to return home to as uncontaminated an environment as possible, which requires planning and most likely some cleaning and rearranging. (See chapter four and Appendix B.)
Creating an Oasis. To aid in avoiding chemical exposure, and because you spend one-third of your life sleeping, people with MCS are urged to create a bedroom oasis, which is a room that is as environmentally clean as possible. Eighty-six percent of the people in Phase I of my study reported getting moderate or great benefit from creating an oasis, and only two percent reported no benefit.
Serial Dilution Testing. Serial dilution is a method used in environmental medicine to diagnose and treat sensitivities to inhalants, such as pollens, dusts, and molds. This method differs from the standard “one size fits all” scratch test, which may examine you for a level of a substance that is too low or even too high to elicit a reaction. In contrast, serial dilution testing looks not only for what substances you react to, but at what level you react. For example, you may be able to tolerate a small amount of mold, but if the dose is higher, you react negatively. Serial dilution testing looks at several levels of exposure by simultaneously injecting a series of progressively stronger solutions of an antigen under the skin. The solutions are usually diluted by a factor of five. All injections cause a 4-millimeter wheal or welt on the skin to form. An injection that causes an additional 2-millimeter increase in the wheal is called the end point. This end point concentration is used as the starting point to begin treatment for the substance to which you are sensitive. Johnson (1997) found that of the people in her study who had tried serial dilution, 6.3 percent said it was an enormous help, 31.3 percent said it was a major help, 15.6 percent said it was a slight help, 18.8 percent said it did not help, 21.9 percent said it was harmful, and 6.3 percent said the effect was unclear.
Provocation/Neutralization. Provocation/Neutralization (P/N) consists of either intradermal (just under the skin surface) or sublingual (under the tongue) testing of suspected antigens at calibrated levels similar to those for serial dilution testing. It differs from serial dilution testing in that it can be used for foods, hormones, and chemicals in addition to inhalants. Also, with P/N testing, only one dilution of one antigen can be tested at a time. If skin testing is done, physicians will assess your sensitivity by observing any reactions you may have to the substance, such as a wheal (welt) on your skin. However, to determine your sensitivity in a sublingual test, testers will rely exclusively on your own internal observations of how you are reacting to the substance. You are encouraged to watch how you feel, and to record any reactions about ten minutes or so after each test. Because only one dilution of one substance is tested at one time, P/N testing is very time-consuming and expensive. Additionally, if you are a “delayed reactor,” you may need to test one substance per test period, as your reactions may not appear within the allotted observation period.
Standard allergy extracts contain the preservative phenol, and should not be used to test those with chemical sensitivities. Also, some people require the use of glycerine-free extracts due to reactivity to glycerine itself. Although antigens are available phenol-free, there is a narrower selection of test substances that are glycerine-free.
Once your antigen doses are identified through P/N methods, you will use sublingual extracts for maintenance and to help neutralize your responses to unavoidable exposures. The extracts are not a carte blanche to exposure yourself to more triggers, but rather will aid in avoiding constant reactions. No one knows exactly how P/N treatment works, but some people seem able to maintain more stability by using these drops. Caution: Those people whose endpoints change often have more problems because doses that once turned off a reaction may begin to trigger it.
P/N testing has been the target of much criticism from the conventional medical community. Rogers (1986) stresses that it is very tedious and exact, and requires hands-on training with an established expert for a physician to become competent in this method. Additionally, background exposures must be controlled for the testing to be accurate, e.g., if you are tested for mold in a moldy office, it can be impossible to determine your level of sensitivity accurately. Rogers is concerned that it hurts environmental medicine when P/N is experimented with inaccurately and then is deemed ineffective. In addition, it seems that some people don’t even have to try it before they form a negative opinion about it. The constant criticism of P/N testing is that there are no double-blind studies that validate it and that both the development and remission of symptoms in the office may be influenced by patient and physician expectations. Rogers attempted to disprove this criticism when she did P/N testing and treatment on horses with hay fever and found it effective. However, the paper was still rejected by reviewers who insisted that P/N testing doesn’t work. Doris Rapp, a leading environmental medical physician, created videos of dramatic changes in children’s behavior as they were being P/N tested for foods and other substances. Although both children and parents have testified that they have received life-saving help from P/N testing, skeptics still are not convinced.
Even individuals with an avid interest in MCS are leery about P/N techniques. Some feel that the testing itself may make patients worse. In addition, if your endpoints change often, the needed frequency of retesting is expensive and difficult. P/N testing may work best with those whose endpoints are fairly stable, and whose sensitivities are fairly limited.
Preservative-free Testing. Johnson (1996-1998) reported MCS patients’ responses to P/N testing for molds, inhalants, foods, hormones, and chemicals with and without preservatives. In all categories, she found that testing with chemicals was rated as more harmful than the preservative-free method. Percentages of people who rated the preservative-free extracts as major or enormous help in the Johnson study included 39 percent for preservative-free inhalants, 37 percent for preservative-free molds, 23 percent for preservative-free foods, 20 percent for preservative-free chemicals, and 15 percent for preservative-free hormones. Preservative-free extracts were rated harmful as follows: chemicals, 19 percent; hormones, 18 percent; molds, 17 percent; foods, 13 percent; and inhalants, 12 percent.
LeRoy, Davis, and Jason (1996) inquired into neutralization of foods and chemicals. Neutralization to foods was tried by 188 people and found to be an enormous help for 9.7 percent, a major help for 9.7 percent, a slight help for 24.7 percent, not helpful for 27.4 percent, harmful for 11.3 percent, and unclear in effect for 17.2 percent. Neutralization to chemicals was tried by 189 people and was an enormous help for 10.6 percent, a major help for 11.6 percent, slight help for 20.1 percent, not helpful for 27 percent, harmful for 15.9 percent, and unclear in effect for 14.8 percent.
Following are the ratings of allergy injections or drops from my first treatment study.
Rated Effectiveness of Treatments for Managing Symptoms in MCS
% % % % %
Number No Mild Moderate Great Adverse
Treatment Tried Benefit Benefit Benefit Benefit Reaction
Shots 95 23 11 4 7 55
Shots 95 14 20 19 33 15
Drops 69 14 13 14 12 46
Drops 98 21 17 23 24 13
(See Appendix E for a reprint of Gibson, Elms, & Ruding, 2003 a study of 101 treatments used by 917 people.)
Sauna Therapy. Many studies have confirmed that people retain and store toxic chemicals in their fat tissues. This means that we can experience chemical assaults not only from the external environment, but also from within. These toxins may move into the bloodstream during exercise and exposure to heat, as well as when you sleep or fast.
Sauna treatment helps to dislodge and mobilize some of the toxins stored in fat by eliminating them from the body through sweating, thus reducing your total chemical load. Using a sauna can reduce the levels of chemicals in fat tissue. Levels may continue to decline even after sauna treatments have ended. This suggests that saunas may energize the body to continue detoxifying itself.
L. Ron Hubbard, the founder of Scientology, created the forerunner of the modern sauna technique when he invented detoxification regimens to clear people’s bodies of illicit drug residues, which he felt were contributing to learning and perceptual problems. The Hubbard regimen prescribes fat mobilization through cardiovascular exercise and nicotinic acid (vitamin B-3) and enhanced excretion through well ventilated heat treatment (temperature at 160 degrees instead of the usual 200 to 210 degrees in a nontherapeutic sauna). Patients are given cold pressed oils to slow intestinal reabsorption of the mobilized toxins that are secreted into the bowel, and electrolytes are monitored and replaced to counteract mineral loss. The diet emphasizes fiber and vegetables. Although the length of treatment varies, three weeks is a common time frame, with some people continuing for six weeks. The costs are several thousand dollars for the treatment and the nutrients in the medically supervised programs. Also, patients must be able to afford housing during the regimen.
Some people have serious reservations about sauna treatments. Cynthia Wilson, founder and director of Chemical Injury Information Network (CIIN), believes that when chemicals in your body are mobilized in the sauna, you risk further damage. Wilson says that CIIN has received numerous reports over the last seven years from people with MCS who have gone through the “quick sauna” program (lasting one to two weeks). Many of these people said they had acquired epileptic seizure activity or had had strokes while they were in the sauna. Wilson also questions whether sauna treatments provide permanent benefits or whether the effects are only temporary. When I asked Wilson whether she thought sauna treatments were helpful at all, she said that using it slowly, perhaps twenty minutes every other day, might give slow and lasting benefit with less risk.
Keep in mind that the heat in a sauna may trigger problems for some (such as people with MS) and the heater’s EMF emissions can pose a potential threat.
Home saunas are available and often are more affordable and convenient. Although a home sauna may give you more control and access to the treatment, monitoring your electrolytes without supervision may be difficult unless you have a physician who can order mineral tests and can guide you in ingesting the appropriate amounts of replacement minerals. If you live in a clean area and are able work out in the sun, you may be able to detoxify and garden at the same time, saving money and growing food in the process.
In Phase I of my research, 40.3 percent of the people who used sauna therapy experienced great benefit, 19.4 percent had moderate benefit, 16.4 percent had mild benefit, 10.4 percent found no benefit, and 13.4 percent had adverse reactions. LeRoy, Davis, and Jason found that of 83 people with MCS who had tried sauna detoxification, 21.7 percent said it was an enormous help, 16.9 percent said it was a major help, 25.3 percent said it had been a slight help, 15. 7 percent said it did not help, 10.8 percent said the effect was unclear, and 9.6 percent said it had been harmful. (If you are interested in sauna therapy, see Appendix B for product sources.)
A newer type of sauna therapy is far infrared sauna (FIR). Far infrared wavelengths are between visible wavelengths and radio waves on the light spectrum. Some believe that this type of sauna is able to mobilize toxics in the body and move them slowly toward the surface into the subcutaneous tissue and then into the sweat without the excessive heat used in regular saunas. Infrared heat is said to penetrate the body to more than an inch and to induce more sweating at a much lower temperature than the 150-200 degrees in traditional sauna. Sherry Rogers cites a Mayo Clinic study that reports improvement in people with end stage congestive heart failure without any negative side effects that would usually be seen for heart patients subjected to sauna heat. She believes that infrared sauna can lower lactic acid level, raise endorphins, kill pathogens, and stimulate circulation and lymphatic activity to cleanse and heal the body (Rogers, 2002). You can find citations that report that infrared heat is used therapeutically in Japan, Germany, and China. It is also pointed out that infrared heaters are used safely to keep newborn babies warm. You can even find the claim that infrared sauna poses a way for those in wheelchairs to achieve a cardiovascular workout because it increases the cardiac output/volume of blood flow. There are many websites devoted to the discussion of infrared sauna and a plethora of companies that sell the units. The sauna is a large expense however and there are some contraindications and considerations. For example, FIR is contraindicated for any new acute joint injuries, it increases menstrual flow, silicone implants absorb heat, and certain drugs may interact with the heat (See http://www.fyh.com/sauna/Far%20Infrared%20Therapy.htm).
Additional Detoxification Methods. Practitioners of both environmental and alternative medicine may recommend other detoxification methods such as coffee enemas, liver and gallbladder flushes, and bowel cleanses.
In Phase I of my study, 40 percent of the research participants who tried coffee enemas and 35 percent of those who experimented with bowel cleanses rated them as having great benefit. Conversely, nearly 35 percent of those people who tried the gall bladder flush rated it as having no benefit at all. Many of the people (39.4 percent) who did a liver flush said it was moderately beneficial. Krohn (1996) recommends a variety of methods for natural detoxification that can be used by people with sensitivities.
ioner of environmental medicine. It may be helpful to speak with people who have been treated by a particular doctor before committing yourself to a long, complicated, and expensive treatment regimen. I also suggest reading as much as possible about environmental medicine. The more you know, the better educated a consumer you will be, and the better you will choose and monitor any treatment you decide to try. (See Appendix C for further reading.)
If you decide that you want to see a practitioner of environmental medicine and are willing to pay the costs involved, which can be considerable, the American Academy of Environmental Medicine (AAEM) can provide you with a list of physicians in your area. (See Appendix C for resources.)
Experimental and Newer Therapies
There are a few therapies that are very experimental in nature (at least for MCS), but which may show promise for some people. At this point, the following therapies have very limited information available and most reports are individual case studies (as opposed to actual experiments), but some people may want to look into them. The next few sections describe such therapies.
Enzyme Potentiated Desensitization
In enzyme potentiated desensitization (EPD), low dose antigens are mixed with the enzyme beta glucuronidase (which is thought to increase the immunizing effects of the allergens), and given in a series of treatments. Edelson and Statman (1998) describe the enzyme as being extracted from abalone digestive glands. Following EPD treatment, it is thought that T-suppressor cells are produced, which then recognize and suppress reactions to subsequent exposures of the injected allergens. According to Edelson and Statman: “EPD does not abolish allergies. Instead, it increases the dose of allergen needed to provoke illness by a factor of between tens and thousands. As a result, ordinary exposures to the allergen become harmless” (p. 143).
Enzyme potentiated desensitization can be administered by two methods. With intradermal injections, the antigens, are introduced by fine needles into the forearm (shots). In the cup method, the antigens are placed in a small cup over scarified (scratched) skin on either the arm or thigh, and allowed to absorb into the skin during a twenty-four hour period. Edelson says that this slow method makes it very safe, and that the immune system will react better to antigens delivered through skin than through injections. Edelson recommends using mixtures of a wide variety of pollens, dust, dander, foods, etc., because many allergens desensitize once they are grouped together. Additionally, using a variety of allergens helps protect against the problem of developing new sensitivities. He does not, however, cite any studies that support this. Doses are given every two or three months for the first year, and the interval can be lengthened thereafter.
While undergoing EPD treatments, there are extremely strict protocols for managing diet, exposures, vitamin intake, medications, and even exercise, particularly between the day before and the week after treatment. Exposures of any kind may overload the system and, in Edelson’s words, change “the ‘whispered’ message of EPD . . . into a ‘shout’ and it can reverse the effect for the allergen that is concerned” (p. 122). Even becoming overheated or using toothpaste can interfere with the treatment.
Edelson describes the need for a “very mixed” diet for food-sensitive people during the week following a treatment. He says that large quantities of individual foods will interfere with desensitization. People should therefore eat tiny amounts of food rather than normal portions and eat a large variety of food types at one time, e.g., eating a small bowl of seven or eight different grains.
Some foods and food quantities, however, may cause more trouble following EPD. Edelson states that the desensitization will not be stable early on, and that safe amounts of foods will increase in the weeks after treatment only to decrease before the next EPD dose. However, the safe quantities are said to increase progressively and eventually stabilize.
Double-blind studies of EPD have found mixed results. Astarita, Scala, Sproviero, and Franzese (1996) found EPD to be effective in the treatment of grass allergy in adults. Two child studies also have concluded that EPD is effective for seasonal allergies (Caramia, Franceschini, et al., 1996; Di Stanislao, DiBerardino et al., 1997). In contrast, a larger study by Radcliffe, Lewith, Turner, Prescott, Church, and Holgate (2003) found no treatment effects.
Johnson’s study (1996-1998) included forty people who had tried EPD: 17.5 percent said it was an enormous help, 20 percent a major help, 15 percent as slight help, 25 percent as not helpful, 15 percent as harmful, and 7.5 percent rated the effect as unclear. My students and I found that of 61 people who had tried EPD, 32.4 percent reported it to be very helpful, 20.6 percent somewhat helpful, 17.6 percent of no noticeable effect, 10.3 percent somewhat harmful, and 19.1 percent very harmful (See Appendix E).
Neurontin is an anticonvulsant that Dallas psychiatrist Jay Seastrunk uses to treat people with MCS. Neurontin is a synthetic amino acid. According to Seastrunk, people with MCS and chronic fatigue syndrome (CFS) may have some localized brain injury that makes it easier for the brain to become kindled or sensitized (see chapter two) by chemicals or electrical incitants. He cites early research that found epileptic reactions may develop in humans after an extended period of time (up to fifteen years) following a traumatic injury on the opposite side of the brain from the epileptic reactions. He says:
“I feel the chemical or electrical stimuli in the environment that activate these neurons become a trigger that fires previously injured or hypersensitive neurons, thereby producing a firing that can progress neuron by neuron to the furthest reaches of the brain, including the emotional area called the limbic system, or to the areas that control arousal, cognition, sensation, memory, temperature, blood pressure, pain, and motor function or any other activity that is brain mediated.”
Seastrunk’s research assistant Dr. Steve Krebaum (1998, personal communication) told me that he was uncertain whether initial localized brain injuries are chemically induced or caused by some other agency. The results of brain imaging techniques, however, such as Magnetic Resonance Spectroscopy (MRS), do lead them to believe that the location of the injury determines the sensitivities in MCS.
The rationale of prescribing neurontin is to stabilize nerve cells and thus interrupt reactions in the central nervous system that are triggered by chemical exposures. Neurontin is not metabolized in the liver, rather it travels through the body unchanged, and is excreted rapidly through the kidneys. Therefore, it must be taken several times daily to maintain effective therapeutic blood levels. Seastrunk advises some patients, particularly those who “had extensive brain injury many years ago,” to stay on the drug for life. However, he says 30 to 40 percent of people with MCS can stop taking the drug after two years. It is common for antidepressants to be prescribed with neurontin simultaneously, as the drug can cause depressant side effects. Seastrunk claims that 10 to 15 percent of his patients respond quickly and have little trouble with neurontin treatment, 60 to 70 percent take longer to respond, but do well, 5 percent don’t do well on the program at all, and 5 to 10 percent don’t comply with treatment. Seastrunk says, “Response time tends to mirror the duration of illness prior to treatment.” That is, the longer someone has been ill, the longer it takes to respond to the treatment.
Thirty-six people in a study conducted by Alison Johnson (1996-1998) tried neurontin treatment. Of these, eleven reported the drug was of enormous help, nine said it was a major help, eight people said it was a slight help, and eight reported it caused harm. Johnson edited newsletters in March and September 1997 that published detailed information about neurontin with excerpts of testimonials from people who had tried it. In early neurontin trials, some people described literally “getting their life back.” However, within six months, some regretted their decisions to try the drug, citing negative effects such as weight gain (even to the point of looking pregnant); edema; digestive problems, including constipation and esophageal reflux; short-term memory deficits; dizziness; acne; tremors; and more. For some, there was an improvement in emotional symptoms, although others described being “spaced out” or “numb.” Interestingly, some individuals felt that neurontin masked their ability to smell dangerous chemicals, but did not prevent them from experiencing the negative effects of a harmful exposure. Still others described very difficult withdrawal symptoms when they tried to get off of the drug. One woman said, “If you are not one of the lucky ones who do better immediately, get off of (neurontin) as soon as possible.” It would be wise to do further reading and/or talk with people who have tried neurontin before making a decision to experiment with this treatment.
You should know that use of neurontin for MCS is considered an off-label use and that Pfizer has been the target of ongoing lawsuits for illegally marketing and aggressively promoting their drug for unapproved conditions. Pfizer, Warner-Lambert’s parent company, agreed in 2004 to pay $430 million in penalties for false marketing, including suppressing a study that showed Neurontin® to be less effective in treating bipolar disorder than a sugar pill (http://www.drugrecallresource.com/html/neurontin_info.html). (See Appendix C for further reading and Appendix E for our study of 917 people.)
Antibiotic Therapy for Mycoplasma Fermentans
Drs. Garth and Nancy Nicolson (1996) discovered a microorganism called mycoplasma fermentans in their daughter’s blood when she returned ill from the Gulf War and they became ill from being around her. Because the Nicolsons were both molecular pathologists they were able to identify the microorganism in their white cells through a test called a polymerase chain reaction (PCR) of the DNA. They also found that half of those tested (Gulf War and chronic fatigue syndrome patients) tested positive for the microorganism.
The Nicolsons recovered by taking a long course of treatment with antibiotics that are active against the mycoplasma. This treatment of four antibiotics, doxycycline (broad-spectrum tetracycline), ciprofloxacin, azithromycin, and clarithromycin, also may provide help for people with MCS who have been tested and find that they harbor the mycoplasma. Unfortunately, many people with MCS are unable to take even one antibiotic because of yeast flare-ups and other reactions to the drug.
It should be noted, the Nicolsons believe that some of the newest forms of the mycoplasma may have been engineered for germ warfare, and may be contributing causes to serious diseases, such as rheumatoid arthritis and AIDS, in addition to Gulf War illness, CFS, and MCS.
"ALF" is a treatment that involves culturing a person’s own T-lymphocytes. Immune cells are placed in cell culture and though weaker cells die, the stronger ones become more robust. The person then receives injections of their own cells, which are supposed to regulate the function of the lymphocytes (helper and suppressor cells). Griffiths, Rea, Griffiths, and Pan describe a study where they employed ALF for 315 people (290 with MCS; 25 controls) and found it to be an immune system modulator with minimal side effects. Patients experienced reduced sensitivities and increased tolerance for particular irritants (See Appendix C for resources). A possible concern is the use of bovine calf serum in preparation of the cell cultures.
Lyme Disease Treatment
With the new understanding that Lyme Disease mimics other illnesses, and is often misdiagnosed, some speculate that it may be a factor in CFS, FM and MCS. With most treatments utilizing long-term, powerful antibiotics, and many physicians uneducated about the condition, it can be difficult to decide whether or not to embark on the attempt to sort out whether or not Lyme is a factor in one’s illness. The conventional treatment for Lyme has been long-term antibiotics, with disagreement as to the required length of this treatment. Many experts believe that the treatment must last several months, although insurance companies are reticent to pay for such long-term protocols. Practitioners often use oral (such as Biaxin or Zithromax) or intravenous (such as Rocephin) antibiotics, sometimes in combination with anti-protozoal medications (such as Mepron).
Holistic treatments involve antimicrobial herbs such as cat’s claw, garlic, and other antimicrobials. The Amazonian herb cat’s claw or Una de Gato (Uncaria tomentosa) is of particular interest, as it has been used as an anti-cancer herb, as a treatment for infections including HIV, and for arthritis. A special form of cat’s claw (Samento by NutraMedix) is available that is said to preserve cat’s claw’s immunomodulating 5-ring Pentacyclic Oxindole Alkaloids (POAs), but not its 4-ring Tetracyclic Oxindole Alkaloids (TOAs) thought to interfere with this immunomodulating activity. (See Appendix B for product sources.)
A study presented at The International Symposium for Natural Treatment of Intracellular Microorganisms in Munich in March of 2003 showed this product to be superior to long-term antibiotic treatment for Lyme Disease. (http://www.samento.com.ec/sciencelib/sarticles/thegreatimpostor.html).
I would suggest reading extensively on this topic to decide if you believe that you show symptoms of Lyme disease. If you decide to pursue this route you will have to be more educated than your physician on the disease, as the chat boards are full of testimonials from people who were misdiagnosed with the commonly used tests. The Western Inkblot test can be fooled by the spirochete hiding in the tissues and the ELISA is said to be inadequate, missing most infections. A new test for Lyme developed by two Lyme experts is the Q-RIBb, which is said to be accurate and quick. (See Appendix B).
Hyperbaric oxygen treatment (HBOT) involves breathing pure oxygen at increased atmospheric pressure (two to three times sea level) in a sealed chamber. The theory behind the treatment is that, while the elevated pressure forces oxygen into the body, toxins and impurities are forced out, thus “clearing” the body of disease causing agents. HBOT has been shown effective in acute chemical exposures that have limited oxygen supply to the brain, particularly in carbon monoxide poisoning. It is currently approved by the Undersea and Hyperbaric Medical Society for the following eleven conditions: carbon monoxide poisoning, air or gas embolism, gas gangrene, exceptional blood loss due to anemia, necrotizing soft tissue infections, refractory osteomyelitis, compromised delayed radiation injury, skin flaps and grafts, crush injuries, decompression sickness, certain problem wounds, intracranial abscess, and thermal burns (Gill and Bell 2004). Some practitioners have experimented with the treatment for disorders such as cerebral palsy and for syndromes such as MCS and CFS. Van Hoof et al. (2003) found a decrease in fatigue in CFS patients who used this therapy. Results suggest the need for further follow-up, as general perceived health and activity levels actually decreased, only to later rebound. One problem for some people with HBOT is claustrophobia from the enclosed space, although, Clark, Rock, and Tackett (1994) did not find significant anxiety in 24 non-MCS patients receiving HBOT.
As an experimental therapy, HBOT is not widely covered by health insurance policies and is not widely available. In addition the cost ($200-500 dollars per session), compounded by the rather high number of sessions necessary (testimonials from people with MCS suggest dozens of initial sessions, followed by a lifetime of prescribed annual or semi-annual follow-up visits) can easily consume more resources than many people have.
If You Choose to Seek Professional Help
I suggest you very carefully investigate any treatment or practitioner you are considering. Medical treatment is expensive and your earning power is likely to have diminished since you developed MCS. Seeking and receiving treatment can require an enormous expenditure of time and energy (particularly if you travel to see an expert). The decision to try a treatment must balance the possibility that the treatment will be helpful against the possibility that it may fail and might actually make you worse. If paying for a treatment option will financially cripple you and emotionally devastate you if the treatment doesn’t work, you need to ask yourself if you really want to empty your bank account on a bet (especially if that treatment helps only a minority of people who try it). Cynthia Wilson of the Chemical Injury Information Network (CIIN) receives at least one call per month from MCS patients who are still sick, have spent all of their money, and have been promised a cure if they can just come up with “another $1,000.” Because of the frequency of false promises by some health practitioners, your delicate state of health, and very likely, your limited resources, I urge you again to do considerable research before embarking on any treatment, especially experimental potentially hazardous ones. I do not advocate any particular treatment for MCS except for chemical avoidance. Some of the following suggestions may help you to determine which treatments and practitioners may be right for you.
How to Investigate MCS Treatments,
Costs, and Track Records
You may want to study, in detail, the particular therapies that are in accord with your personal philosophy, or that you can financially afford or feel comfortable trying. There are a number of therapies that are promoted as useful for MCS. (See chapter seven for alternative, holistic treatments.) However, no one has the money or energy to try them all. Alison Johnson’s work showed that most treatments help no more than about 25 percent of the people who try them.
There is no magic bullet for MCS, although chemical avoidance helps most people reduce their symptoms substantially. I agree with Johnson, who suggests that there is something to be said for saving your money until there is an effective treatment that works for a large number of people, either from conventional or alternative medicine.
Investigate MCS Practitioners
Respondents in all of the phases of my study had a very difficult time finding accessible and effective treatment for MCS. Despite spending large amounts of money on evaluation and treatment, satisfaction with health care was low. Some respondents found some help using a variety of conventional and alternative treatments. Others tried a seemingly endless cycle of one treatment after another and succeeded only in emptying their bank accounts without experiencing much physical improvement.
Given this state of affairs, it is clear that before you make an appointment with a practitioner, you should speak with other patients who have been treated by him or her, even if the practitioner is well known in the field of environmental or occupational medicine. It may be possible to find out beforehand how patients are treated, a practitioner’s accessibility, probable costs, and whether or not treatment was helpful or harmful. The Chemical Injury Information Network (CIIN) can provide you with a list of physicians from various fields who treat MCS patients. In addition, you may be able to get referrals from people in your local MCS support group, who have tried various conventional and alternative practitioners in your area. You also can speak with people at national organizations, such as CIIN and the National Center for Environmental Health Strategies (NCEHS), who talk with hundreds of individuals with MCS each week and hear numerous stories about various practitioners.
The sad truth is that although some people’s health can improve, it is rare for anyone to recover completely from MCS. This underscores the importance of chemical avoidance to prevent the worsening of your condition. MCS is a chronic condition. It is necessary to come to terms with how you will survive in the long haul, and emptying your bank account for some questionable therapy may not be your best strategy. On the other hand, some people have been helped tremendously by various treatments and practitioners.
It is important to remember that not all of your symptoms may be caused by MCS (Wilson 1999, vol. 10). When a new symptom appears, it may have a non-MCS cause, and be treatable. Wilson gives an example of a woman who attributed her terrible sinus headaches to her MCS, when actually they were caused by a deviated septum.
Before Making an Appointment
Before making an appointment with an MSC practitioner, you may want to consider the following:
Ø Find out what the costs will be, how much you will be expected to pay up front, and for exactly which services you will be billed. For example, will the practitioner bill you for every phone call and letter written, and if so how much will be charged? Will lab test results be forwarded to you at no extra cost or will the practitioner charge to interpret each test? For instance, if you have seven tests and you are charged ninety dollars for each interpretation (even though labs generally include a good one), your bill will increase by $630. (Your insurance company probably will not reimburse this cost.) In addition, if practitioners intend to write their own interpretations, how long will it take for you to receive the report? Some offices take months, and by the time you obtain your test results, they may be obsolete.
Ø Who will do the billing and is that person accessible? Find out who will be doing the billing, get that person’s phone number, and call. If they do not answer the phone or if you do not get a call back, you have a problem.
Ø Can you reach the practitioner if you need to? Try calling the practitioner’s office to see if you are able to reach a real person, even just office personnel. In some cases, speaking directly to a person, and not to a machine, is almost impossible. How difficult is it and how long does it take to obtain a quick emergency consultation with the practitioner?
Ø If you are seeing an environmental medicine practitioner, find out whether the office is a safe environment. This is particularly true if you will be paying the high costs of Provocation/Neutralization (P/N) testing. (See page 103 for more information on P/N testing.) You may want to ask about the heating source in the office, possible pesticide applications, age of the building, any use of disinfectants and fragrances, new carpeting, fluorescent lighting, and any chemical use that may be a problem for you in terms of exposures. (I have seen environmental medicine practitioners’ offices located in the same building as restaurants that cooked with gas, with nurses smoking in the stairwell on their breaks, where disinfectant was sprayed in the bathroom, and where outside air filled with recently cut grass was circulating through the air conditioner as patients were being tested for grass sensitivity!) All of these exposures can affect your reactions to testing. It may be that the improper control of these exposures is one reason for some of the controversy regarding P/N testing and treatment.
Ø What EMF exposures will be problematic for you in the practitioner’s office? Although medical equipment is a necessity in a physician’s office, if you are EMF sensitive will you be able to be seen in a relatively safe area away from machinery and fluorescent lights?
Ø How is your insurance handled? Does the practitioner accept your insurance and file for payment, or will you be expected to pay in advance and wait for your insurance company to reimburse you?
Ø Is the practitioner a primary care physician or an MCS specialist? Many MCS specialists expect you to have another physician as your primary care physician to take care of general medical problems and emergencies. MCS specialists tend to provide only services relating specifically to MCS.
Ø Does the practitioner handle emergencies? If you have an MCS emergency (such as a pesticide exposure, a serious work exposure, or some other problem), will you be able to obtain guidance from the doctor in a timely manner?
Ø If you need to apply for disability, will the practitioner support you?
Ø Is the practitioner willing to be involved in legal disputes? If you are involved in court litigation and you need medical evidence in your lawsuit, you need to find out—before making an appointment— whether the practitioner will help you. Not all practitioners are willing to provide written or verbal legal testimony.
Ø Talk to people who have seen that practitioner. You can place an ad in MCS-specific newsletters, such as N.E.E.D.S., asking people who have seen a particular practitioner to call you. The N.E.E.D.S. newsletter is published by the privately owned National Ecological Environmental Delivery System and will print messages from its customers in its advertising booklet free of charge.
Going to the Hospital
One of the greatest fears for people with chemical and electrical sensitivities is that they will be hospitalized. They fear they will be too sick to advocate for their own safe treatment or that they will be ignored when they try to protect themselves from anesthetics, perfumes, cleaners, drugs, plastic tubing, and pesticides. Elevators, blinking lights, monitors, and other electrical equipment can present a danger as well.
Although people with MCS can never fully protect themselves while they are hospitalized, there are helpful sources for educating medical personnel and securing safe treatment for patients. Regarding education, Toni Temple (1996) has written a booklet for hospital employees, entitled Healthier Hospitals, in which she explains how to provide a safe medical environment for people with MCS. Her recommendations are extensive, and include structural (e.g., no carpet or vinyl blinds) and functional (e.g., no perfume) changes to minimize toxic exposures during hospital stays. Temple and others have facilitated well-received workshops for hospital employees that initiated policy changes at some hospitals. If you have the energy, you might want to provide the staff or nursing educator at your local hospital with a copy of this book and offer to organize a workshop as a follow-up. As the result of attending a workshop, for example, a community educator from a Chicago hospital created an MCS protocol that is followed whenever anyone with MCS is at that facility.
In non-emergency situations, you can write a letter to be shared with your surgeon or medical doctor before you are hospitalized. Sherry Rogers has published a sample letter in her book, The EI Syndrome (1986, 510–515), and suggests how you and your environmental practitioner can modify it to meet your needs.
Essential elements of Roger’s letter include:
Ø Alert hospital personnel that you will be bringing some of your own supplies, such as bedding, food, water, etc.
Ø Request written orders that no one enter your room wearing perfume, aftershave, or other scents.
Ø Ask for a room with a window that opens into a clean area (not traffic, the parking lot, incinerator, ambulance driveway, or delivery area).
Ø Explain that, for you, local anesthetics are always preferable to general anesthetics. For example, specifically request that avoidance of carbocaine and halogenated or fluorinated hydrocarbons, which commonly are used for general anesthesia, not be used for you. (It is important to note that not all people have problems with carbocaine. In fact, some people use only carbocaine as a local anesthetic.)
Ø Ask that nitrous oxide be kept to a minimum.
Ø Although everyone is different, Rogers’ letter suggests that thiopental sodium (Pentothal) or Brevital, preceded by 100 percent oxygen, be used to induce anesthesia; succinyl choline chloride (Anectine) or curare be used for paralysis; Sublimaze be used to erase memory; and Innovar, Demoral, or Nisentil be used for pain.
Several practitioners of environmental medicine believe it is not wise to rely on tests to determine your sensitivity to anesthetics because the results may not be true. You may be able to tolerate it the first time you are exposed, but not the second. That is, the first exposure may sensitize you to the anesthetic, and you might then react negatively to it during the surgery.
If you do not have an environmental medicine doctor, you can enlist your primary care physician’s help in communicating your needs to your hospital ahead of time. This may not only save your life, but may give you peace of mind.
Of course, not every hospital stay is planned. To protect yourself against possible harm during emergency hospitalizations, visit your local hospital admissions coordinator and bring a letter from your doctor (if you have one) that explains your condition. Ask to have the letter kept on file. This letter should list the most important precautions to be taken if you are ever hospitalized or treated in their emergency room. (A letter on file will have greater credibility with staff than instructions from a moaning, supine person hurriedly babbling something about no perfume, gas anesthetics, or bug spray!) Note that a letter on file would not necessarily be heeded in an emergency; the best protection for a patient with special needs is to be accompanied by a strong, articulate advocate. Therefore, you might want to prepare an informed friend how to advocate for you if you must go to an emergency room or are admitted to a hospital.
Toni Temple of the Ohio Network for the Chemically Injured and two area Cleveland hospitals have collaborated on a new 28-page book entitled “Healthier Hospitals.” The book’s purpose is to educate hospital personnel regarding appropriate and safe treatment for those with MCS. The book has a sample letter that can be used with your hospital. (See Appendix C for further reading.)
Healing Is Unique for Everyone
From the information in this chapter, you can see that the healing story for MCS is long, complicated, and incomplete. We are far from understanding exactly how the body breaks down in response to MCS and, to make matters worse, most people deny that the problem even exists. People who are attempting to heal must walk a fine and jagged line due to insufficient information about MCS and commonly encountered mistreatments. Healing is also highly personal, as no one therapy—other than chemical avoidance—seems to help everyone. In fact, one person’s cure often is another’s undoing. This is extremely frustrating, but it highlights the fact that only you can decide which therapies are appropriate to try. The personal nature of healing forces you to rely on your own knowledge and intuition. This isn’t easy, but it certainly reinforces learning and growing.