Dr. Grace Ziem's
DR. GRACE ZIEM'S
ENVIRONMENTAL CONTROL PLAN
FOR CHEMICALLY SENSITIVE PATIENTS
16926 Eyler's Valley Road, Emmitsburg MD 21727, 301-241-4346
1. REQUIRED READING
2. PESTICIDE USE WARNING
3. REMODELING WARNING
4. DIETING WARNING
5. ILLNESS LOG
6. MEASURING EXPOSURE LEVELS
7. CONTROLLING EXPOSURES IN YOUR WORKPLACE
8. CONTROLLING EXPOSURES IN YOUR SCHOOL
9. CONTROLLING EXPOSURES IN YOUR BEDROOM
10. CONTROLLING OTHER EXPOSURES IN YOUR HOME
11. CONTROLLING AIR QUALITY
12. CONTROLLING WATER QUALITY
13. USING EXERCISE AND SAUNA TO ELIMINATE TOXINS FROM YOUR BODY
14. CONTROLLING EXPOSURES IN FOOD
15. CONTROLLING EXPOSURES IN YOUR MEDICAL CARE AND MEDICATIONS
16. CONTROLLING NEIGHBORHOOD PESTICIDE EXPOSURE
17. IF YOU NEED TO MOVE TO ANOTHER DWELLING
18. PSYCHOLOGICAL COUNSELING
19. SEX AND MCS
20. OXYGEN USE DURING REACTIONS
22. LEGAL ISSUES
24. GETTING MORE INFORMATION
Read through the article that Dr. Ziem wrote for her patients entitled "Multiple Chemical Sensitivity: Treatment and Follow-up with Avoidance and Control of Chemical Exposures," and then read through it again. (The article is included in your patient packet and also can be ordered separately from Dr. Ziem's office). The first time, be thinking about the general approach needed to improve your health. The second time, look at specifics and make notes of things you will need to do to make your environment safer and to reduce your body burden of toxic chemicals.
Also read through the book Less Toxic Living by Carolyn Gorman, which Dr. Ziem will give you when you come for your first visit (or you can order it from her office by mail). Carolyn Gorman is a health educator who has counseled thousands of chemically sensitive patients and this book reflects her experience and that of many patients regarding what things make such persons sick. In each category of product, think about the products you may have around the house which are unsafe. Any products which contain toxic chemicals described as things to avoid in this book should be removed from the house and garage whenever possible. (Toxic chemicals stored in your garage may release vapors that can attach to fabric and other surfaces of your car.) Replacing toxic products is much less expensive than being treated for the illness and chronic fatigue that often accompany ongoing exposures.
Other references which help you make a healthier environment include the books Success in the Clean Bedroom by Natalie Golis and Common Sense Pest Control by Olkowski. UNTIL YOU KNOW MORE ABOUT WHAT PRODUCTS TO AVOID, do not purchase any potentially toxic consumer products without first checking in Less Toxic Living (or with other chemically sensitive persons) for recommended alternatives.
DO NOT USE OR ALLOW THE USE OF ANY PETROCHEMICAL PESTICIDE IN YOUR HOME OR WORKPLACE. Most commercially available pesticides contain petrochemicals and substances which are toxic to the brain and nervous system. They can cause severe effects in chemically sensitive patients. YOU CANNOT AVOID PESTICIDE ILLNESS BY SIMPLY LEAVING THE ROOM AND AIRING OUT THE SPRAYED AREA. Most pesticide spraying applications leave a toxic residue that remains for weeks or months, gradually giving off toxic chemicals into your home or work environment.
DO NOT DO ANY REMODELING IN YOUR HOME WITHOUT FIRST DISCUSSING THE PROJECT WITH DR. ZIEM OR SPECIALISTS IN NON-TOXIC BUILDING AND CONSTRUCTION MATERIALS, SUCH AS JIM NIGRA (818-889-6877) OR MARY OESTEL (512-288-2369). If you notice any remodeling, construction or repair being done in your workplace, it is URGENT that you consult one of the above experts immediately, to avoid a severe increase in your illness.
Petrochemicals are stored in body fat. When the fat is "broken down" with dieting (it enters the blood before being "burned" as energy), the chemicals stored there also enter the blood. Chemically sensitive patients often have increased symptoms with dieting. If you are overweight and need to diet, you should do so in conjunction with exercise and sauna therapy (see below), to help you excrete these chemicals. Do NOT try to achieve rapid weight loss (no more than one pound per week) and avoid "diet pills." (It is better to avoid sugars and eat more fiber-containing foods.) If your symptoms are still significant, contact Dr. Ziem to discuss the risks and benefits of dieting to your health. Unless you are overly thin, YOU SHOULD TRY TO AVOID GAINING MORE WEIGHT. Regular exercise (like daily walking in a non-toxic park) can help with weight control.
Please keep a written record of your illness reactions, with entries in 3 separate columns as shown in the example below:
|Date||Symptoms||Exposures (Prior 6 Hours)|
|1/15/94||Headache, Nausea, Confusion||Pumped Gas, 2 Hours In Traffic|
A sample log sheet is included in your patient packet. Keeping the information this way will make it easier for Dr. Ziem to review your exposures (to see what things in your environment still need attention) and your symptoms (to see what types of medical problems you have been having).
Under date, record the date you noticed a worsening of your symptoms. Under symptoms, list the changes you noticed in your mind or body, such as headache, sore nose, cough, chest tightness, or whatever other effects you noticed. If you have too many symptoms to record them all, record the main ones and any new ones and put "etc." so Dr. Ziem will know you had other unlisted symptoms. Under the exposure column, list any exposures you had in the 6 hours before you first noticed symptoms or started feeling worse. List the location where you were in those 6 hours before you felt worse, such as at work, in a hardware store, in traffic. If there were several locations, list them. Bring your log to each appointment with Dr. Ziem and give it to her to review.
Measuring exposure levels in the home or workplace is expensive and not usually very helpful in controlling chemical sensitivity since we don't know at this time what levels of exposure cause reactions or what ongoing levels of exposure might make them worse (there may be no safe detectable level in some cases). However, if you need to document whether a chemical exposure has occurred, Dr. Robert Olcerst (410-566-0859), a toxicologist and industrial hygienist, may be able to help you. Please contact Dr. Ziem first to be sure the information cannot be obtained in a less expensive way. Dr. Olcerst should not make decisions on environmental controls for you unless discussed with Dr. Ziem.
The "threshold limit value" exposure limits used to regulate exposure to toxic chemicals (also called TLVs) were never designed to protect sensitive workers. The "TLV booklet" states that "Individuals may also be hypersusceptible ... because of ... previous exposures. Such workers may not be adequately protected from adverse effects ... at or below the threshold limit" [1, see Reference section at the end of this paper]. The TLV exposure limits used by industrial hygienists were adopted as legal standards before it was known that there were serious scientific and other problems in the development of the TLVs. Health effects below the TLVs are commonly reported in the medical literature . Research into the TLVs has documented serious problems with corporate influence during their development which was not known to the public . In addition, comprehensive literature searches were not done for the development of the vast majority of the TLVs . Finally, the TLVs have been shown to demonstrate no statistical correlation with the exposure levels reported to cause illness in the literature that was used by the TLV Committee . They do, however, bear a strong correlation with existing exposure levels in industry at the time . Many TLVs were apparently based largely on economic rather than health considerations . Indoor air quality standards have been largely derived from these TLVs, and thus these standards suffer from the same scientific inadequacies as the TLVs themselves .
The Americans With Disabilities Act (ADA) requires that employers and others make reasonable accommodations for persons with handicaps. If your chemical sensitivity interferes significantly with your ability to work, attend school, do errands, or do housework, you have a handicap as defined under this law. Reasonable accommodation for someone needing a wheelchair includes a specially designed stall in the rest room, special water fountains at a height the person can reach, etc. Reasonable accommodation for a chemically sensitive person can include special filtering devices designed for chemically sensitive persons, a no-smoking policy, a special parking area away from fumes, non-toxic pest control, non-toxic cleaning products, non-toxic construction products, the elimination of "air fresheners" (which are petrochemicals and toxic), and other environmental controls.
Dr. Ziem will ask you about your workplace and potential exposures and develop a plan for reasonable accommodation for your workplace. If you have workplace exposures you think are a problem or if you notice that you feel more sick after work than at the end of a weekend or holiday, you could have workplace exposures that need to be better controlled. Make notes about your health (use your illness log) and anything about the workplace you want to discuss with Dr. Ziem and call her for an appointment. Don't just "tough it out" with a problem workplace: Dr. Ziem has more than a few patients who did this and all went on to develop more serious and longer lasting health problems. Never sacrifice your health because you don't want to "make waves" or "cause trouble," even a few days of problem exposure can cause increased disability for many weeks or months, and a few weeks of toxic exposure can cause problems for many months or even years. If you are asked or required to resume working (or living) in a building which may be affecting your health, it is important that you be examined by Dr. Ziem shortly before you return on a regular basis and again, one to three months after you've returned. By comparing the results of your physical exams and laboratory tests, Dr. Ziem will be able to document whether your return has had any impact on your health and whether accommodation measures are adequate.
The ADA is civil rights legislation that forbids discrimination against the handicapped just as we have legislation forbidding discrimination against women and racial minorities. It is enforced by the Justice Department of the United States Government and penalties can be stiff. If your employer has been notified of your condition and refuses to make reasonable accommodation or harasses you in any way (illegal under this law), contact Dr. Ziem immediately. Keep written notes of any conversations with your employer or employer representatives and any problems you have had. Dr. Ziem will interview you about the situation and fully support your need for a safe environment, even if this requires testifying against your employer.
Obtain a copy of the ADA Handbook from your Congressperson and read it: it is for your protection. Also ask your state government whether your state has any additional laws to protect handicapped individuals. Public employees may be covered by a different federal law: the Rehabilitation Act of 1973, which you also can obtain from your Congressperson. Remember, there are over 40 million persons in the U.S. with some handicap: with accommodation, most can live normal, fulfilled lives. If you have legal questions about the law, contact Mary LaMielle at National Center for Environmental Health Strategies (609-429-5358). If you have problems with your employer on accommodation or harassment, consult an attorney specializing in enforcement of the ADA, such as Nicole Shultise (410-547-1771). The government's ADA hotline is 800-466-4232. For technical assistance on ADA requirements, call 800-526-7234.
Chemically sensitive children and adults who wish to attend public or private school have a legal right to accommodation under the ADA similar to that discussed above with regard to the workplace. This protection applies to dormitories, classrooms and other areas necessary to pursue education. If you have a problem with a school environment, contact Dr. Ziem and she will evaluate the environment, develop an environmental control plan for you, and support you in any other way necessary.
Since most people spend 7 to 8 hours daily in bed, it is critical that your bed be non-toxic. Water beds made of plastic can off-gas phthalates and other chemicals, especially when they are heated, as is often the case. Even regular mattresses with synthetic covers or slip covers can be a source of toxic off-gassing. Ongoing exposure to chemical offgassing can cause increased illness in chemically sensitive persons.
The ideal non-toxic bed has a frame made of metal or untreated, solid wood and a cotton mattress or futon, preferably made from cotton grown without pesticides (sometimes called "organically grown cotton"). The mattress also should not have been treated with pesticides or other chemical additives, which are typically used for preserving commercial mattresses. Note that a doctor's prescription is required to obtain a mattress that has not been treated with fire-retardant chemicals. Since foam pillows also can offgas chemicals, they should be replaced either with all-cotton pillows (from "organically grown cotton") or--if you are sure you are not allergic to dander or feathers--with a down or feather pillow (if the animals have been raised without pesticides and the feathers, down, and cloth have not been chemically treated). When buying new linens (or clothing), you also should avoid permanent press fabrics and look for "organically grown cotton." Never use a fabric softener when washing your bed linens or clothing as these products also can irritate chemically-sensitive individuals. For more information, read Success In The Clean Bedroom, by Natalie Golis, published by Pinnacle (Rochester NY). Organic cotton clothing and linens can be ordered from Jantz Design (707-823-8834), Dona Designs (214-235-0485), and Heart of Vermont (800-639-4123).
If your chemical sensitivity is severe enough to significantly interfere with one or more major life activities (e.g. work, housework, errands, school, etc.), this qualifies as a handicap under the Fair Housing Act and you are protected by this law from discrimination in housing. Whether you live in a house, apartment, condominium or trailer, if the dwelling is managed by another party (e.g. an owner or building manager), they must make reasonable accommodations to provide you with a non-toxic environment under the anti-discrimination provisions of the Fair Housing Act. Non-toxic accommodations have been upheld by the courts as "reasonable" for MCS patients. Listed below are the accommodations that you should request in writing from the housing manager or owner. Of course, if you are the owner/manager of your own property, you should immediately implement these changes yourself. Dr. Ziem's patients in the Maryland/DC area are encouraged to take advantage of an environmental home inspection service offered by Dan Jerrems (410-633-6769), a Physician Assistant trained by Dr. Ziem who also has extensive experience in environmental and non-toxic products.
Once you've notified your landlord or building manager about your specific needs, they have a legal responsibility to try to accommodate you. This may include providing non-toxic housing for you in a transition period until the problem can be corrected, providing you with additional charcoal filter capacity in your living area to reduce air contamination of your living space and belongings, doubling building ventilation for interior contamination for up to a year, and switching to less toxic alternatives as recommended by Jim Nigra or other experts. If you notice ongoing violations that cause your symptoms to worsen, you may wish to pursue your legal rights with the Justice Department in Washington, D.C. (202-514-4736). If you have been rendered seriously ill by violations, the responsible party should have to pay for an intensive sauna detoxification program for you if Dr. Ziem feels that is medically necessary (see Using Exercise and Sauna, below). If you need housing accommodations, contact Dr. Ziem, she will fill out a special form and support you in whatever other ways are necessary. Housing accommodations to request (or pursue yourself) include the following:
A. No petrochemical pesticide or herbicide use should be allowed on the building grounds, in any common-use areas of your building, or in any other building areas that share a common air supply with your living area. It is NOT safe for them to notify you first and then spray, since pesticide residue lingers for week and can contaminate the air and thus porous objects (fabrics, wood, walls, etc.) in your living space. Non-toxic alternatives are available and economical to use. For information on these alternatives, see Controlling Neighborhood Pesticide Exposure, below.
B. A no-smoking policy should be enforced in the entry, halls, stairways, elevators, and other common-use areas of your building (if you have symptoms aggravated by smoke).
C. Only non-toxic cleaning agents should be used in the common-use areas of your building (no petrochemicals, no chlorine products or other moderate to severe irritants, and no waxes or finishes containing petroleum products). For information on less toxic alternatives, consult with Jim Nigra of Nigra Enterprises (818-889-6877). Information also is available in Less Toxic Living and Non-Toxic and Natural (see required reading, above).
D. No dry cleaning should be allowed of fabrics or carpet in common-use areas, since dry cleaning uses toxic solvents which can offgas for days. Steam cleaning should be used instead, using only non-toxic cleaners.
E. No petrochemical "air fresheners" should be used in common-use areas. Any spray or solid "air freshener" is probably a petrochemical. If in doubt, ask your local Poison Control Center about the brand name. They may not have expertise on MCS but they can tell you whether or not any specific brand of product contains a petrochemical ingredient (unless the manufacturer has listed it as a trade secret or otherwise failed to disclose it). They also can usually tell you what percentage of the total product is made up of petrochemical ingredients.
F. No petrochemical-containing products should be used for repair, maintenance, construction or remodeling in any common-use areas or areas that share an air supply with yours. These materials also should not be used in outdoor areas near your windows or other air-intake that might contaminate your air supply. Examples of products to be avoided include pressed wood and plywood (formaldehyde and toxic glues), fiberglass (formaldehyde), some other insulation (if treated with formaldehyde, phenol or other petroleum products), many paints (if they contain solvents or petroleum additives, fungicides, etc.), wall-to-wall carpets (because of toxic adhesives, offgassing from latex backing), many roofing compounds, many sealants, many coated fabrics. Alternatives are available; for more information contact Jim Nigra (818-889-6877) or other experts in non-toxic building materials such as Mary Oestel (512-288-2369), architect Hal Levin, the publisher of Indoor Air Bulletin (408-426-6624).
G. Minimize exposure to exhaust from heating systems and appliances that use natural gas, oil or wood. If your dwelling is heated with oil or gas or if you have appliances (washer, dryer, hot water heater, etc.) that use natural gas, you are being exposed to petrochemicals in your home even when the devices are functioning normally. A malfunction could cause even greater levels of exposure and burden you with months or years of added disability. If these appliances cannot be replaced by solar or electric devices, consider relocating. Wood stoves and fireplaces should not be used since combustion products aggravate symptoms, and under no circumstances should you use kerosene or other liquid-fuel-burning portable heaters. Even portable "radiators" that use electricity may contain chemicals which can leak out and also, therefore, are not recommended. While the replacement of heating systems and major appliances can be expensive, these changes may be a necessary investment to protect your health (and future earning capacity). Dr. Ziem considers safer heating devices and appliances to be medically necessary expenses. Most medical insurers don't cover them, of course, but they are legitimate medical expenses in many cases for persons who become ill because of a workplace exposure, home contamination caused by another party, manufacturer negligence (toxic product, inadequate warning or labels, etc.), and certain other circumstances. Consult an attorney to discuss your legal rights.
H. Keep common areas (and your living area) well-vacuumed and free of dust as chemical contaminants can cling onto house dust for long periods, allowing them to be stirred up and recirculated.
I. If you read a lot of newly printed papers, books or journals, consider using a reading box to control your exposure to ink and paper offgassing (available from Safe Haven 800-280-6519). Store printed materials in relatively airtight containers whenever possible: metal trash cans or used "ammo" boxes from army surplus stores can be used. If working at a table or desk, place it in front of an open window , and have only the necessary printed matter for the task you are working on in front of you.
J. If you buy new cottons that bother you, a "pressure cooking" method can remove some or most of the offending chemical, mold, etc. Be certain the new clothing is one size too large for you, because it will shrink. You may want to test a button before washing; they might be damaged.
1. Fill a large pressure cooker with water, adding 3T tolerated detergent, 1/2C Borax or baking soda and clothes.
2. Heat to pressure on a range, then put it outside on a hot plate for 1-3 hours at maximum pressure (15 p.s.i.).
3. Let it cool or hose it down till the pressure is zero, crack open the lid, then pour off the horrible smelling brown soup of cotton oils and chemicals.
4. Do steps 1 and 2 again (Skip this for older clothes).
5. Do a rinse cycle, then a full wash cycle, then dry.
Clothes might require one more wash/dry cycle, but probably not. Elastic is not ruined.
Colors will bleed a bit, but plaids are still plaid .
Garments with residues of scented products, formaldehyde and certain other contaminants can be rendered less toxic by washing with powdered milk added to wash water. This also helps residue smells in green cotton and even organic cotton.
K. Research by NASA shows that certain plants can help reduce pollution. (NASA removed polluting sources and used activated charcoal filters as well). Boston fern, pot mums, dwarf date palm, and spider plants worked well for formaldehyde and certain other pollutants. Other good pollution-fighting plants include peace lily, golden pathos, English ivy, aloe vera, philodendron and Chinese evergreen.
AIR FILTERS: There are special air filter devices that can greatly assist persons with chemical sensitivity. The best filters contain "activated charcoal" that will "soak up" (adsorb) toxic chemical vapors from pesticides and other chemical products made of petroleum or coal. You may need an additional filter in your device for formaldehyde if your original sensitivity began with an exposure to formaldehyde (in fiberglass, particle board, carbonless copy paper, formaldehyde treated fabrics, etc.), or if your home is located near a major highway (since traffic exhaust contains formaldehyde). If you have allergies to pollen, dust, or other airborne particles, if your home is located near a main road, or if you are bothered by fireplace or other smoke, you also may need a "particulate" filter that can trap small particles.
All these filters are considered medical devices and, if medically necessary for your health, will be prescribed by Dr. Ziem. If your insurance carrier reimburses for other medical devices but refuses to reimburse for these, Dr. Ziem considers this a form of discrimination against chemically sensitive persons (unless the policy specifically excludes all filter devices, including those for persons with asthma). If you have carefully reviewed your insurance policy and feel your insurer is reimbursing for other medical devices, especially other filter devices (you should ask if they cover filter devices for people with asthma), but they refuse to reimburse for your filter, contact an attorney specializing in "bad faith" cases against insurance companies such as Alan Casper in Philadelphia (215-994-1771). It is also possible that the vocational rehabilitation department of your state or locality may fund or advance funds for filters (and/or sauna, see below) as part of an effort to rehabilitate you for work. If Dr. Ziem has recommended the filter device for you, she will stand behind your medical need for it. Activated charcoal filter devices are considered effective in helping pollutant control by NASA 
Using air filters does not necessarily mean all your windows should be kept closed, unless you know you would be made sick from nearby pollution. Outdoor air is good for you if not polluted; try opening the windows in your bedroom for a few weeks to see if you feel better (but close them if the exposures bother you). Note that, in some cases of interior contamination, ozone generators may be helpful, but these CANNOT be used while you are in the building because of the irritant effect of the ozone on your respiratory system (even at levels too low to smell). The building also must be very well ventilated after the ozone generator is turned off and before you return-- for 48 to 72 hours at a minimum. Do NOT use an ozone generator without first consulting Dr. Ziem.
Buying house and room filters: Air filter devices should be located at least in rooms where you spend a lot of time, such as the bedroom or other sleeping area. If you can afford it, try to install filters in each of your other major living areas. They will reduce damage to your health caused by air pollution from neighborhood pesticide treatments, fireplaces, highway traffic, industrial and commercial emissions, and so on.
The most effective approach is a filter system for your entire home, especially if you own your home. If your illness is severe enough to interfere with your ability to work, you probably need a whole house system unless you live in a relatively non-polluted area. Probably the least expensive whole house filter system is manufactured by the Thurmond Air Quality Systems in Texas (800-247-7873).
The capacity of most portable (room-sized) filter devices is rated in cubic feet. To determine the number of cubic feet you need to filter, measure the room's length, width, and height in feet and multiple these numbers together (length x width x height) to get cubic feet. DO NOT buy a portable filter device from a hardware store, department store, mail order catalog, or other supplier that does not specialize in filters for chemically sensitive people. These devices can contain toxic products. We recommend that you purchase portable filters through Nigra Enterprises (5699 Kanan Rd, Agoura CA 91301-3328; phone 818-889-6877), which specializes in protective products for the chemically sensitive. Owner Jim Nigra is familiar with various brands and will help you select the most effective and economical device(s) from a range of specialized manufacturers. Call Dr. Ziem if you encounter any unresolved problems with his service; to date this has not occurred.
Sometimes persons who are quite sensitive to many things notice a problem with certain types of charcoal: you should request samples to test or exchange your filter if this occurs. Some particulate filters such as HEPA filters may have glues which bother some individuals even though filters recommended by NIGRA are designed for chemically sensitive persons. If you notice any increase in symptoms after your filter arrives that seem worse around the filter, contact Mr. Nigra immediately. Remember, the usual pattern is gradually feeling better with the filter: if you are worse around it, something is wrong.
CAR FILTERS: You also may want to consider purchasing a filter for your car, especially if you have increased symptoms after being in traffic. These devices plug into the cigarette lighter attachment of your car and filter air inside the car. The windows must be closed to use this system, however, so it may be impractical in hot climates unless your car is air conditioned. Some patients also find it helpful to have their car's engine steam cleaned, since "fresh" air drawn into the car's interior through intake ducts in the engine area may be contaminated with grease and oil from engine surfaces.
AIR FILTERS TO AVOID-IONIZERS: Ion generators act by charging the particles in a room so that they are attracted to walls, floors, tabletops, draperies, occupants, etc. Abrasion can result in these particles being resuspended into the air. In some cases these devices contain a collector to attract the charged particles back into the unit. While ion generators may remove small particles (e.g. those in tobacco smoke) from the indoor air, they do not remove gases or chemical vapors and may be relatively ineffective in removing large particles such as pollen and house dust allergens. Although some have suggested that these devices provide a benefit by rectifying a hypothesized ion imbalance, no controlled studies have confirmed this effect. Ion generators also create ozone, an irritant to the air passages.
AIR FILTERS TO AVOID-OZONE GENERATORS: Ozone, a lung irritant, is produced indirectly by ion generators and some other electronic air cleaners and directly by ozone generators. While indirect ozone production is of concern, there is even greater concern with direct, and purposeful introduction of a lung irritant into indoor air. There is no difference, despite some marketers' claims, between ozone in smog outdoors and ozone produced by these devices. Under certain use conditions, ion generators and other ozone generating air cleaners can produce levels thought harmful to human health. A small percentage of air cleaners that claim a health benefit may be regulated by the FDA as a medical device. The Food and Drug Administration has set a limit of 0.05 parts per million of ozone for medical devices. This level may not be safe for the chemically sensitive. Although ozone can be useful in reducing odors and pollutants in unoccupied spaces (such as removing smoke odors from homes involved in fires) the levels needed to achieve this are above those generally thought to be safe for humans.
Respirators & Masks: It may sometimes be necessary for you to wear a simple "nose/mouth" mask or respirator in order to reduce your personal exposure in environments that are contaminated beyond your control. Sometimes these types of exposures are unavoidable, and if the unavoidable exposures make you ill, you should definitely try using a respirator to reduce your exposure. Examples of such situations are running into a store for errands and feeling sick, or getting caught in traffic and feeling sick (but don't use a mask as a substitute for a car filter).
Well-fitting masks are made by 3M but not everyone can tolerate them, because they are made of synthetic materials. For lighter exposures, Jim Nigra recommends a lightweight "nuisance odor" mask with a small amount of charcoal (#9913). For heavier exposures, you should use a thicker mask with more charcoal (#8709 which also, unfortunately, is bulkier and heavier). These can be ordered from Nigra Enterprises (818-889-6877).
For people who cannot tolerate the 3M mask, cotton and silk ones are available with a space to insert a packet of activated charcoal. These can be ordered from Sandra DenBraber, R.N. (817-860-9299). All masks containing activated charcoal should be kept in an air tight metal or glass container when not being used; otherwise the charcoal will continue to pick up chemicals even when you are not wearing it, greatly shortening its useful life.
We do not recommend disposable "dust" masks as these do not filter out chemical vapors.
Humidifiers: Humidifying the air can reduce dryness of the mouth, nose and lungs in the winter. However, chemically sensitive persons should use only water that has gone through an activated charcoal water filter (or well water that is not chemically treated) so their humidifiers do not mist solvents into the air. If you have a history of allergy to mold, try to find a humidifier in which the water constantly circulates, as mold can grow easily in those types that hold standing water. Do not clean the humidifier with chlorine-containing products (e.g., Comet, etc.), Or with other cleaners containing petrochemicals: consult Less Toxic Living for safer cleaning agents. If you notice any symptoms you think may be aggravated by your humidifier, try turning it off for about a week and compare your symptoms. If they decrease during that week and increase when you turn it on again, contact Dr. Ziem or Jim Nigra (818-889-6877) for recommendations.
READING BOXES: Patients who experience illness when exposed to ink in newsprint or other printed material can obtain a "reading cabinet" from The Living Source (817-756-6341) that allows reading, writing and even typing with greatly reduced exposure. Other enclosures are available to trap emissions from computers, printers and fax machines. Contact Jim Nigra (818-889-6877) for more details.
Chlorine used in water treatment reacts with organic (natural) material in the water to form new chemicals like chloroform and other toxic substances. These may aggravate chemical sensitivity when breathed in from shower vapors or ingested via drinking and cooking. Since a lot of exposure occurs during showering and bathing, you should consider installing showerhead and faucet filters (available from Nigra Enterprises, above) or a whole-house water filtration system, which would also treat water used in clothes-washing and dishwashing machines (these uses also release chemicals into your home). Some people further reduce drinking and cooking water exposures by either using bottled water (which can get expensive) or installing an extra-effective filter on their kitchen tap. If such a filter is used in addition to a whole-house system, the filters will not need to be replaced very often and the water will taste better. Nigra Enterprises recommends and sells whole-house water filtration systems made by Ametek Equipment, Coast Filtration, and General Ecology.
As exercise breaks down body fat, it releases the petrochemicals stored in fat which then enter the bloodstream. While these chemicals are partly sweated out during exercise, more can be sweated out if the exercise is followed immediately by a sauna. Medical studies of chemically-exposed persons have shown that sweating induced by the regular use of saunas can gradually reduce the level of pesticides and other toxic petrochemicals in the body. Although filters and other environmental controls can reduce new exposures to petrochemicals, sauna and exercise are the only treatments that can reduce the total level or "body burden" of chemicals already in your body.
A small and relatively inexpensive sauna made by the Radiant Heater Company designed specifically for chemically sensitive persons can be obtained from Nigra Enterprises (818-889-6877). This utilizes a low temperature range (110-120 degrees F) which warms superficial fat and induces better excretion of fat soluble petrochemicals than higher temperature saunas, which cause more water loss. With low temperature, sauna time is longer (30 minutes to one hour). Dr. Ziem's patients have improved significantly with sauna therapy and she now regards this as a medically necessary treatment for chemically sensitive persons. Insurers who cover medical devices should reimburse for this; it will save them money in reduced future medical costs. You will probably need a prescription from Dr. Ziem for the sauna. (Do not purchase a regular commercial sauna). Do sauna during cooler months: during warm and hot months the body will sweat without sauna. You can dress slightly more than usual when walking outdoors to slightly increase sweating: simply return home and shower.
Unfortunately, commercial saunas such as those used in gyms and health spas rarely help chemically sensitive persons because they are cleaned with chlorine-containing or other irritating and/or toxic chemicals. They are also often contaminated with cosmetics and other products containing petrochemicals from previous users. Also remember: a hot tub is NOT a sauna. Hot tubs contain chlorinated water and are also treated with chemicals that can react to form toxic compounds in the water.
If--after beginning sauna therapy--you experience a rash in the areas of greatest sweating, this is probably due to excreting chemicals through your skin. Unless this is minor, reduce your sauna time for a while. The rash should improve as your body burden (and thus chemical excretion) declines.
Another sauna designed for the chemically sensitive made by Fred Nelson (517-697-3989) is slightly less expensive. Its disadvantages are that it is a lying down model (easier to fall asleep), that it cannot be returned and that the unit does involve a small motor (used outside the sauna space). It has a zipper enclosure. If you use it, it MUST be used with a Dayton mechanical windup half hour timer (part #6X763) available from 410-391-9000 for about $22. The heating unit MUST be plugged into the timer so that it automatically shuts off at 30 minutes. The zipper can be opened about 4" at the head end to allow you to look out and watch TV (TV laying on its side). This sauna achieves temperatures of 120-140 degrees F, compared to about 110-120 degrees F for the Radiant Heater sauna.
Sauna procedure--FIRST EXERCISE: You need to exercise in a relatively non-toxic setting, because you breathe deeper and faster during exercise and your lungs will breathe in more pollutants. Non-toxic settings include your home, especially if you have filters and don't have a home contamination problem. Exercise videos and exercise machines can be used. Even with filters, however, the average indoor environment is often more contaminated than a non-toxic park. Walking in a park that is not pesticide sprayed or close to heavy traffic is great exercise; just sauna immediately after coming home. If you are unable to locate a non-toxic park or other outdoor walking exercise, please contact Dr. Ziem's office at (410) 633-6769. She can request your local park(s) to stop using toxic pesticides and other lawn care products as an accommodation of your MCS disability. NOTE THAT SPENDING TIME IN NON-TOXIC OUTDOOR SETTINGS SEEMS TO SPEED RECOVERY in Dr. Ziem's MCS patients. You should begin exercising at a level comfortable for you. Don't "push" yourself; as you get in better condition, you can gradually increase the vigor or time you exercise. If you are over 35 years old and have not exercised recently, if you are over 50 years old (regardless of exercise status), or if you have a history of heart disease or high blood pressure, any exercise more vigorous than walking should be discussed first with your physician. In any case, you don't need to exercise until you "sweat" since the sauna will take care of that.
THEN SAUNA: Drink 12 oz. of water and then enter the sauna immediately after completing your exercise. If you use the Fred Nelson sauna, plug it into a 1/2 hour timer. Begin with about 10-15 minutes. If you experience any discomfort or dizziness, leave promptly. If you do fine for 2 weeks at 15 minutes, increase to 20 minutes if you wish. If you have no ill effects at all in the sauna, you can gradually increase to a maximum of 45 minutes (increasing the time by not more than 5 minutes each week). The temperature in the Radiant Heater sauna can be increased up to 130 degrees by putting a 100% cotton (or 100% wool) blanket over the cloth enclosure. Put a small towel on the bench where you sit so your sweat does not contaminate the sauna. One exercise/sauna procedure per day is usually sufficient. Try to sauna at least 5 to 6 days per week: you can do it every day if you wish. Remember that your body gradually adjusts to heat but can lose most of this adjustment in a few days. Thus, if you skip more than a day between saunas, cut back the time or temperature from your last sauna. Some saunas contain "hot rocks"; if you put water on these to create steam, the water should be charcoal filtered (or chemically untreated well water) to avoid releasing solvents in the sauna area. SET A TIMER TO AVOID THE RISK OF FALLING ASLEEP IN THE SAUNA. Drink another 12 oz. of water to avoid a headache.
THEN SHOWER: Immediately after completing your sauna, enter the shower. Soap up your scalp and entire body with a non-toxic soap and rinse off thoroughly, rubbing your skin with your hand, washcloth, or a loofa to remove the contaminated sweat and soap. (Clean the washcloth well after each shower.) Your shower water should be treated with a showerhead or whole-house filter so that you are not exposed to solvents or chlorine during your shower (see Improving Water Quality, above). Bathing is NOT recommended for women because bladder infections occur easily with women sitting in a bathtub. Showering, in any case, is probably a more effective way to remove contaminants from the skin for both men and women. If skin dryness occurs, use a non-toxic skin softener such as "organic" olive oil (grown without pesticides).
Pesticides used in agriculture are very toxic to chemically sensitive persons and cause increased changes in the nervous system and other organs. Unfortunately, most commercially grown foods have significant pesticide residue. This is typically spread throughout the food and cannot be effectively removed by scrubbing, peeling, etc. The Environmental Working Group (a D.C. non-profit agency) found significant pesticide levels on many fruits and vegetables in the U.S., And provided evidence of underreporting this problem by the FDA. Their report is entitled: "Forbidden Fruit: Illegal Pesticides in the U.S. Food Supply." In order to avoid adding to an already excess body level of toxic chemicals, the chemically sensitive person should eat foods grown without pesticides and without pesticide treatment (such as fumigation) during storage, shipping, etc. This food is usually called "organic."
Preservatives, coloring agents, and other food additives also may be toxic to chemically-sensitive persons. Additives that may aggravate symptoms include MSG, benzoic acid, parabene (methyl, propyl, butyl, etc.), TABA, BHA, BHT, BHQ, polysorbate 80, sorbitol, sorbic acid, chlorobutanol, and ethylene oxide. Foods without these agents are often called "natural," but foods labeled natural may not be organic unless also labeled organic. Whenever possible, purchase organic foods described as without additives, preservatives, etc.
Organic foods are often more expensive than contaminated foods, partly because it takes more labor to grow them and they don't last as long on the shelf. Your regular medical insurer does not reimburse for the excess cost of organic food (just as they don't reimburse for a special diabetic diet). However, if your case is work-related or the result of a negligent manufacturer (dangerous product, product with inadequate warning labels, etc.), Dr. Ziem feels that the excess cost of organic food in these situations is a legitimate medical expense. Thus, keep track of your grocery expenses before and after you began to purchase organic foods, and consult an attorney to understand your legal rights in this area.
Meats should be from animals raised on organic pastures (without pesticide treatment) and/or fed grain that has not been grown or treated with any pesticide. This is very important for meat, since the chemicals found in non-organic grains tend to build up (or "bioaccumulate") in the animals that eat them. Animals also should be raised without antibiotics, hormones and other synthetic chemicals. Ask for a written statement from the grower and/or supplier to ensure a safe meat supply.
Fish from the ocean are less polluted than fish from fresh water in most cases (a sad commentary on "freshwater" pollution). Also, shell fish (such as scallops, shrimp, crabs, lobsters, clams, and oysters) dwell on the bottom where toxic chemicals tend to accumulate, so they are more polluted than most seafood. This also applies to flounder, which lays on the bottom. Fish that eat other fish (carnivores) tend to be more toxic than those that eat plants, since when carnivores eat other contaminated fish the chemicals concentrate in their flesh. Most fish, however, are still more healthy for your heart than red meat. For information about organic foods in Maryland, contact the Maryland Organic Farming Association (301-371-4814). For other states, contact the National Committee Against the Misuse of Pesticides (202-543-5450) or the National Center for Environmental Health Strategies (609-429-5358). It is preferable that foods not be stored or microwaved in plastic containers or plastic wrapping (use less toxic cellophane made from wood, available from NEEDS, 1-800-462-6333).
BRAIN-DAMAGING FOODS--EXCITO-TOXINS: There are certain food substances which are similar in chemical structure to body substances which transmit nerve messages (neurotransmitters). These food substances can cause such excess stimulation of nerve cells that the nerve cells actually die from over-excitation and exhaustion. These substances are known as excito-toxins. People at greater risk include children, those with low energy levels, and persons with chemical injury (since this injury weakens the brain's protective "blood-brain barrier"). Some evidence suggests that chronic intake of excito-toxins increases risk of Parkinson's, Altzheimers and other degenerative diseases of the nervous system.
Excito-toxins include aspartame (Nutra Sweet) and monosodium glutamate (MSG). Unfortunately, MSG can be in foods WITHOUT being listed on the label. Additives that contain MSG (without listing MSG on the label) include autolyzed yeast, yeast extract, calcium caseinate, sodium caseinate, hydrolyzed protein, hydrolyzed oat flour, hydrolyzed plant protein, plant protein extract, hydrolyzed vegetable protein and textured protein. MSG is usually contained in bouillon, broth, flavoring, malt flavoring, malt extract, natural beef or chicken flavoring, seasoning, stock, again without any mention on the label.
MSG kills nerve cells by allowing excess calcium to enter the cell. Animals exposed to MSG become obese even with modest or lower food intake. Since Nutra Sweet can have the same effect, people consuming excito toxins may be unable to lose weight normally by dieting.
Excito toxins in liquid form (soups, beverages) are more dangerous, since they are rapidly absorbed. Glutamate from MSG remains high in human blood longer than in any animal tested. Junk foods contain the highest levels.
Other brain stimulants to avoid are caffeine, coffee, chocolate, some headache medicines, many cold medicines, appetite suppressants and wake-up pills.
Reduce your exposure by reading all food labels, reducing consumption of pre-prepared foods, and asking the manufacturer in writing about MSG and aspartame when in doubt. Also learn more by reading the book: Excito toxins: The Taste That Kills, by Russell Blaylock, M.D., a neurosurgeon.
TOXINS IN FOOD: Chemical sensitive patients evaluated by Dr. Ziem have shown impaired ability of the liver to detoxify toxic substances. Some food preparation methods can increase toxins in foods.
More toxins are generated by:
Thus a commercial hamburger or hot dog with french fries is often a "toxic meal".
REDUCE TOXINS BY covering food when cooking, use lower temperatures for pan frying and use low fat meats. Milk, cheese, eggs, beans, peas, soy are protein sources that are less toxic with cooking. Best cooking methods are boiling in water, steaming without first browning, poaching or microwaving (in glass).
Substances which help protect your body from toxins include quercitin, catechin, flavones and flavonols, tochopherols and other antioxidants. Roasting and baking yield low to intermediate levels of toxins, as does low temperature pan frying. (Source: Robbana-Barnat, S. "Heterocyclic anines: occurrence and prevention in cooked food", Env. Health Persp 104:282-288, 1996).
FOOD INTOLERANCE: Many patients with chemical sensitivity feel that certain foods aggravate their illness. Such foods are often those they eat most frequently, even daily, such as milk and dairy products, wheat, corn, apples, etc. People with food-related symptoms, sometimes called "food intolerance," may experience reactions up to 18 hours after eating, though usually sooner. If you suspect that certain foods may aggravate your illness, you should try eliminating these one by one from your diet for 4 or more days. Then you may eat the suspect food just once again, but carefully measure your pulse before and after doing so (by feeling the wrist or the artery in the neck and counting a full minute using the second hand of a watch or clock). Also compare your eyes for swelling (bags or circles) and look for any changes before and after in your mood (restless, irritable, sleepy, etc.). If you think you have identified a problem food, wait at least 4 days again to get it out of your system and then you may try eating again if you wish.
Another way to evaluate for food intolerance is a "diagnostic rotating diet" (our term). In this approach, food groups are eaten only once in 4 days, recording symptoms. Problem foods are checked for and eliminated, if any. If you feel much better eliminating certain foods, we feel you are probably intolerant to them. The procedure is complicated, since food groups must be understood, as well as interpretation of symptoms. If you wish to follow this approach, we would refer you to Natalie Golas (301-948-1116) who has years of experience doing this for MCS patients. For some patients, this can make a significant difference, especially more severely ill patients.
To track your food sensitivities, you also can keep a food diary, listing what you ate at each meal, what symptoms you noticed, and when. Some patients try a "rotating diet," not eating the same food more often than once every four days. If you stick to a regular rotation diet, you can more easily track any adverse reactions due to newly introduced foods. Remember, as discussed above, to eat only foods not grown with pesticides whenever possible, as pesticide residues also may cause serious reactions which are sometimes confused with food allergies. Also read all labels very carefully to screen out prepared foods that contain ingredients your are trying to avoid (such as corn, wheat, and/or milk). More information on foods is in the book Success in the Clean Bedroom by Natalie Golis.
PLASTIC CONTAINERS: Food stored in plastic containers can become contaminated with the petrochemicals in the plastic (Kailin, Medical Annals of D.C., October 1964). Store food in glass or metal containers whenever possible, or in cellophane bags made from wood (cellulose). This can be obtained form NEEDS (800-634-1380). Natural or wood-based cellophane tears more easily than plastic but after a few trials you will be able to use the bags multiple times. Secure bags tight by twist tie or doubling over and sealing with non-toxic tape (this seems to keep food best). They may be used for freezing also. Glass can also be used for freezing if at least one and one-half to two inches of air is left at the top.
Dr. Bill Meggs, an ear, nose and throat specialist who has conducted research on chemical sensitivity, has found typical sinus inflammation on biopsy--including swelling, redness and "cobble stone" changes--in almost all of his MCS patients. In Dr. Ziem's experience, it is common for doctors to misdiagnose this inflammation as a bacterial infection and prescribe treatment with antibiotics. Because chemically sensitive patients often develop reactions to antibiotics and other synthetic medications, and seem susceptible to yeast infection with antibiotic use, it is important that the doctor do additional tests to determine whether or not bacterial infection is in fact present. This can be done by performing a white blood count. Typically with bacterial infection, the white blood count is increased and there is an increase in the number of neutrophils, the type of white blood cells that responds to bacteria. If the neutrophils are not increased in percent or in number it is unlikely that the infection is bacterial. In this case, Dr. Ziem recommends reducing exposure first to see whether symptoms improve before using any antibiotics, especially since antibiotics may cause side effects and drug sensitivity reactions. This may also help prevent the frequent problems of yeast or candida infections that often plague chemically sensitive persons after multiple doses of antibiotics.
Patients who notice tightness of the airways with difficulty getting enough air, chest tightness and shortness of breath are sometimes given inhalers by physicians to open up the airways. Unfortunately, most of these inhalers contain petrochemical propellants which can aggravate illness in chemically sensitive patients. Doctors should avoid prescribing inhalers with petrochemical propellants. If your doctor feels that this is necessary, he or she should document that your lung function does actually improve with the inhaler and that you do not experience side effects from its use. This is typically done with a lung function test such as flow rate.
In Dr. Ziem's experience, irregularities of the heart beat and/or rapid heart beat are common in chemically sensitive patients after exposures. While medications for these symptoms are available, they do not seem to work as well in chemically sensitive patients. Unless the symptoms are life threatening, therefore, Dr. Ziem recommends controlling the environment instead, which is a safer and more effective preventive measure.
Many medications can interact with other petrochemicals and/or affect the way the body is able to get rid of petrochemicals from the environment. It is important that you share this section with your physician because it has been written with your doctor in mind. Phenol often increases symptoms in chemically sensitive persons and is found in medications such as certain throat lozenges, calamine lotions, some antacids, and phenol-camphor petrolatum lotions. Whenever possible, phenol should be avoided. Substances such as phenacetin, acetanilide, and the disinfectant phenazopyridine are metabolized to petrochemical-like substances which sensitive persons may find problematic.
Medications that reduce certain liver enzymes (P450 enzymes) can cause pollutants to build up in the body. These enzymes include barbiturates, benedryl, amantadine, and indomethacin, as well as aspirin, cimetine, and propranolol. Medications which cause an increase in the P450 liver enzyme system can cause a problem for certain other chemicals which are broken down faster to toxic "intermediate" chemicals. These medications include phenobarbital, phenytoin, carbamazepine, meprobamate, amobarbital, glutethimide, antipyrine, phenylbutazone, testosterone, rifampin, griseofulvin, and others. Some medications reduce blood flow to the liver, which makes it more difficult to metabolize some pollutants. These include propranolol and cimetine.
Medications which increase liver blood flow can cause a problem with certain chemicals. These include adrenergic medications such as epinephrine and also nicotine and caffeine. Medications that are tightly bound to proteins in the body can displace chemicals which are bound to proteins and, thus, make the chemicals more available to act on the body. These medications include aspirin, sulpha drugs, and phenylbutazone. Medications that inhibit the body enzyme cholinesterase make the individual more susceptible to pesticides containing organo-phosphates or carbonates. Such medications include eye drops for glaucoma and medications for myasthenia gravis. The ability of the body to excrete pollutants depends upon the urine not being too alkaline or acid: thus, medications that affect the urine acidity can influence the body's ability to excrete pollutants. These medications include ammonium chloride, sodium bicarbonate, thiazide diuretics, and acetazolamide. The medications listed above are examples of medications that act by different mechanisms and are not intended to be a comprehensive listing of all medications that can affect the body's handling of all pollutants. Thus, before taking any medication, please review these mechanisms with your physician.
Chemically sensitive patients can become very ill with the use of anesthesia. Anesthesia typically involves a significant dose of synthetic chemicals to cause unconsciousness. Patients can remain ill for weeks or months following general anesthesia. For many individuals, acupuncture can provide adequate pain control for surgical procedures. The following is a list of acupuncturists in the Maryland area that you may want to contact. Note that this listing does not imply Dr. Ziem's recommendation or endorsement:
Dr. Cheng (202)
Floyd Herdrick (703) 978-4956
David Godel (410) 657-2389
Dr. Trent (202) 659-0515
Dr. Wu (202) 363-2455 c/o Jo-Ellen Hamden
Many chemically sensitive persons become ill from petrochemical pesticides used by their neighbors. Maryland and some other states (CO, CT, LA, MI, NJ, PA, and WV) have laws requiring that you receive advance notice for nearby commercial pesticide application if you so request: see the sample request form in your patient packet of materials for Maryland. Contact the National Coalition Against the Misuse of Pesticides (202-543-5450) for information on other states. Some states only cover properties bordering yours. This is inadequate for many patients. Try explaining how toxic pesticides are to your neighbors by focusing on their own health, their children, their pets, etc. Most people don't know that pesticides easily enter the body through the skin, that they remain as a toxic residue for days, weeks or longer, that many cause nervous system and/or immune damage, and that even pesticides shown to cause cancer or birth defects are still marketed and sold as "safe." When your neighbors realize these things and learn about the non-toxic alternatives available, it is much easier to create a less toxic neighborhood safe for roaming children and pets as well as adults. Let them know that children in homes using lawn pesticides were four times more likely to develop sarcoma cancers (soft tissue cancer) and children whose parents used pest strips were twice as likely to develop leukemia .
PESTICIDE ALTERNATIVES: Bill Currie of the Institute of Integrated Pest Management (301-753-6930) has many years of experience assisting building managers and persons with chemical sensitivity in developing non-toxic pest control programs for both grounds (lawns, etc.) And buildings. He can provide an economically feasible and low-toxic approach which can greatly reduce risk of disability and consequent legal repercussions. He has consulted for HUD and Dr. Ziem on these reasonable accommodations for the handicap of chemical sensitivity. Other sources of information on alternatives to pesticides include the New York Coalition for Alternatives to Pesticides (518-426-8246), entomologist Albert Green (202-708-6948), William Forbes, the non-toxic pest control expert for Montgomery County (MD) Public Schools (301-840-8122), and landscapers with expertise in non-toxic grounds maintenance, such as Nature's Tailors (410-655-7821). You also may want to consult Common Sense Pest Control by Olkowski.
If--after pursuing all the above environmental controls--you are still severely handicapped by exposures in your home or neighborhood--you should consider moving to a less contaminated environment, even if it means breaking a lease or other housing contract. (Dr. Ziem can assist you with this, if done for medical reasons.) Of course, you also may need to move for other reasons, unrelated to your illness. Whatever the case, you are strongly urged to:
A. Avoid buying any home, condo, trailer or other dwelling until you have lived in it for at least 12 months to see whether seasonal and other exposures (pesticides, wood stoves, etc.) are going to bother you. Let Dr. Ziem know if you need medical documentation to arrange for a one-year trial lease.
B. Avoid suburban areas in which chemical lawn treatments are used by neighbors or local government.
C. Avoid high pollution areas near highways, industrial facilities, waste dumps, etc., And congested urban areas.
D. Consider relocating to a wooded area, since plants and trees can help detoxify air. An ideal location is very close to a state, local or national park or forest if pesticides are not used. (Dr. Ziem can help discontinue toxic pesticide use on such public land as a reasonable accommodation for you.) If you locate in such an area, keep bedroom windows open at night whenever possible. Dr. Ziem's patients who live in such areas have improved much more rapidly than average.
E. Choose a dwelling with electric or solar heat and appliances. Dr. Ziem's patients who use only electric heat and appliances also improve more quickly.
F. Ask for a written statement confirming that the dwelling has never been treated with chlordane (a toxic pesticide which persists for decades). Also ask for written records on all other dwelling/grounds pesticide use.
G. Consider a dwelling using well water, as long as the dwelling is not located near agricultural facilities that use pesticides. Patients using well water seem to do better, although most of them also live in less polluted areas. If well water is available, the water quality should be tested first by an independent laboratory to check for possible chemical contamination.
Keep in mind that low income and disabled patients may be eligible to receive assistance (financial and otherwise) in locating low-toxic housing through their state or local housing commission. If this is available to you, be sure to ask the official(s) you are dealing with to contact Dr. Ziem about discuss the specific accommodations needed in your case to provide for a low-toxic environment.
Sometimes the home, work, and social adjustments needed by chemically sensitive persons can strain their (and their family's) psychological ability to cope. Fatigue and changes in the nervous system can also impair sexual function in some persons, and other problems can strain a marriage or family relations. If you have unsolved problems within your family related to MCS, please talk to Dr. Ziem, who is willing to assist you, or ask a support group to recommend a counselor.
People who are tired and achy often experience problems with sexual function. A healthy sex life helps the immune system, however. We think you can enjoy sex more with the following suggestions. If fatigue or pain are problems, your partner should assume the positions that require the most energy, and allow you to be the less active partner. You can still give pleasure by touching and kissing areas exciting to your partner. Women can also strengthen muscles involved in orgasm in the vaginal area. This can be done by trying to interrupt your stream of urine at least once when emptying your bladder, which helps build these muscles. (More interruptions build them faster, but may be hard at first). (If you can only move one muscle, this is the one!) Also try sex at times of the day when you are less tired.
If vaginal yeast infections are a problem, consult section 15 in this document. Women can help avoid developing bladder infections following sex by always emptying the bladder shortly after sex, by asking the partner to wash hands carefully before sex, and by asking the partner to avoid touching the vaginal area with a hand that has had contact with the anal area. For lubricants, synthetics may be a problem, but you can experiment with butter or vegetable oils made from foods you are not sensitive to. Incense and perfumes can not be used to set the mood, but good music, videos or other approaches can work. All natural (organic cotton, etc.) bedding can reduce coughing and other less romantic symptoms. As you gradually improve with environmental controls and fresh air, you will gain vigor. Regular walking outdoors will help this. Sometime check out the movie, Coming Home, which shows a beautiful love scene between a war vet who is a paraplegic and a beautiful woman. The movie tastefully portrays happy sex even during this difficult situation. We encourage you to be creative, patient, and persistent.
Some patients with chemical sensitivity who are having a reaction to an exposure feel reduced symptoms with oxygen. This may be because blood flow to their brain can be reduced during these reactions (preliminary data from SPECT brain scans on people with MCS after exposure challenges).
When oxygen is used, it should not be used at a flow rate over 2 liters per minute (people with lung disease may stop breathing at higher flows and more flow is usually not necessary). Plastic mask and tubing often aggravate symptoms: a ceramic mask usually works well, as does Tygon tubing. The tubing must be soaked and then repeatedly washed in water containing baking soda, inside and out (1-2 Tbs. per quart). Mask and tubing are available from the Environmental Health Center (214-368-4132). A prescription is necessary for obtaining oxygen and special mask and tubing. Carefully follow ALL precautions with oxygen: NEVER use or store in a room with an open flame (cigarette lighters, cooking stove, sterno heater, etc.).
Proteins are needed to properly break down chemicals in the body. Certain protein "building blocks" or amino acids-such as glycine, glutamine, taurine, and cysteine-are used in processing chemicals. Deficiencies of various protein building blocks can interfere with processing certain chemicals. Deficiencies can occur with increased exposure to certain chemicals , and can be aggravated by problems with absorption (common in MCS) and vegetarian diets. (Vegetarians may wish to reconsider animal and seafood protein needs, especially if fatigue is present).
Mineral, vitamin, and nutrient deficiencies-especially calcium, copper, iron, magnesium, zinc, and vitamins C, E, B complex, flavin, and gluathione-also reduce the body's ability to handle foreign chemicals since these nutrients are used up in the body's processing of petrochemicals . Nutritional evaluation for nutrient deficiencies is recommended for MCS patients with persistent chronic fatigue or with poorer absorption of food (frequent loose stools, frequent undigested food in stools). Others at increased risk of nutritional deficiencies include: persons with significant recent exposure to petrochemicals, those with a poorly balanced diet, those lacking adequate animal (or seafood) protein, and those with a long history of frequent consumption of processed or "junk" food. Animal protein such as beef, chicken, pork, mutton, etc. can accumulate antibiotics, synthetic hormones, and pesticides in the fat (often marbled in too well to effectively remove), so try to buy organically raised and range-fed (or free-range) meat whenever possible.
If you are a Chronic Fatigue Syndrome (CFS) sufferer having difficulty with a disability insurance provider and if your insurer refuses to accept this as a medical (non psychologic) disability, and you would like to be a part of a class action suit on this issue (at no cost to you), please mail the following: Your name, postal address, e-mail address, phone number, the name of your insurance company, a brief description of your problem and, if you have it, a copy of your letter of denial or cancellation from the insurance company. Send all of this information to:
SPIN (Stop Predatory
Insurers Now), c/o Nancy Schilling
CFIDS HEALTH WATCH Newsletter
1167 Coast Village Rd., #1-280
Santa Barbara, CA 93108
An MCS group called NOLA-EI (National Organization of Legal Advocates for the Environmentally Injured) has been tracking insurance and disability discrimination cases (especially UNUM cases) and trying to organize a class action lawsuit. For more information on NOLA-EI and MCS discrimination, contact:
PO Box 29507, Atlanta, GA 30329
Phone: 404-264-4445, Fax: 404-325-2569
GETTING ANOTHER CAR: If you need to replace your car, it may be best to buy a used car that has had time to "off gas" chemicals from carpets, plastics, treated fabrics, undercoatings, etc. Try to get a car from a nonsmoker or someone with allergies who avoids air fresheners and other chemicals. Used rental cars used only for nonsmokers may be a good buy. Ask whether pesticides have ever been sprayed in the car. Some chemical odors can be removed from carpeting by using a solution of half AFM Carpet Shampoo and half Mystical Cleaner in a water-extraction carpet shampoo machine. An ozone generator may be used in the car for up to a few hours (longer may damage the interior). The car should then be aired for a few weeks after the ozone and before use, with windows open if possible. Never occupy any space treated with ozone before it has been thoroughly ventilated. The car dealer may allow you to leave the car on the lot with windows open after ozone treatment for several weeks.
New cars are probably a greater risk. Many leathers are treated with formaldehyde, which gives that "new leather smell." Fabrics are coated with anti-stain treatments ("new car smell"). Undercoating treatments may aggravate symptoms for several weeks or months. Ozone and carpet shampooing can be done to reduce exposures as discussed above. Using a car filter device is even more important with a new or used car. Consider the Allermed model if you do not own one already.
INDEPENDENT MEDICAL EXAMS: If you are required to get an independent medical evaluation by an insurer or employer physician and are concerned that spending time in a potentially toxic medical office could aggravate your illness, please contact Dr. Ziem's office for assistance.
LEGAL ADVICE: Some patients become chemically injured as a consequence of workplace exposure, some through dangerous or improperly marketed products or services. Some develop total prolonged disability preventing them from gainful employment, and some are denied reasonable access to less toxic housing, workplace, or classrooms. All have legal rights in the United States to: workers' compensation; redress under product liability precedents; Social Security and/or other disability income; and reasonable accommodation under the Americans with Disabilities Act, respectively. Furthermore, patients may find that legal recourse is necessary to secure the necessary environmental controls to reduce exposures and thus illness effects.
However, legal issues are very complex in chronic chemical injury cases. The lawyer you select must be experienced both with pursuing chemical injury/sensitivity cases and with the specific legal action(s) appropriate to the situation. Even then, new scientific knowledge is rapidly emerging and attorneys will need to update their technical understanding on at least a yearly basis. Dr. Ziem strongly advises that your attorney contact MCS Referral and Resources (410-889-6666), preferably before filing the claim, obtain and review all medical and medical-legal information recommended, and be familiar with ever-expanding precedents in the recognition of these disorders. Cases with merit have been lost because of inadequate preparation or background of the patient's attorney.
TRAIN TRAVEL: If you need to take a train (Amtrak, etc.) And are unable to persuade them to provide less toxic seating for you (nonsmoking car with no pesticide spraying in the last 1-2 months, and no odor masking, disinfectant or air freshener petrochemicals in a rest room), please contact Dr. Ziem's office for assistance.
You may have questions about your environment that come up in between your appointments with Dr. Ziem. There are groups of chemically sensitive persons in many states that share information and support. In Maryland, contact Carol Beauregard, the hotline coordinator of the Chemical Sensitivity Disorders Association (PO Box 24061, Arbutus MD 21227, 410-792-4875). Like many support groups, CSDA publishes its own newsletter--The Chemical Sensitivity Connection--which is available for just $10 per year. To learn about support groups in other states, contact any of the national organizations listed below. Also listed below are national organizations and hot lines that you can contact for information about particular chemicals and pesticides. For more information on reducing exposures and finding less toxic alternative products, contact Carolyn Gorman, the health educator who has counseled thousands of chemically sensitive persons and the author of Less Toxic Living, at 214-368-4132. For information on MCS in children and school issues, contact Marian Arminger at 410-247-3953.
National MCS Organizations & Publications:
Chemical Injury Information Network, P.O. Box 301, White Sulfur Springs, MT 59645; 406-547-2255
Publishes "Our Toxic Times" Membership: Free (donations requested)
Environmental Access Research Network, Route 1, Box 16G, Epping ND 58843; 701-859-6367
Publishes "Environmental Access Profiles" in Our Toxic Times (see above) and maintains extensive MCS library of over 10,000 medical references.
Environmental Health Network, P.O. Box 1155, Larkspur, CA 94977; 415-331-9804
Publishes "The New Reactor" Membership: $10 to $35
Human Ecology Action League (HEAL), P.O. Box 49126, Atlanta GA 30359; 404-248-1898
Publishes "The Human Ecologist" Membership: $15/year (national organization with local chapters)
MCS Referral & Resources, 618 Wyndhurst Avenue #2, Baltimore, MD 21210; 410 889-4944, www.mcsrr.org
Publishes "Recognition of MCS" which
documents MCS statements and policies of federal, state and local government
authorities, as well as court rulings and statements of independent organizations.
Offers protocol for diagnosis and treatment of chronic carbon monoxide poisoning, a common cause of MCS.
Center for Environmental Health Strategies, 1100 Rural Ave, Voorhees,
NJ 08043; 609-429-5358
Publishes "The Delicate Balance" Membership: $15/year
INFORMATION ON CHEMICALS, PESTICIDES AND PRODUCT SAFETY:
· EPA Sponsored National Pesticides Telecommunications Network, 800-858-7378 (806-743-3091 in TX)
· Environmental Research Foundation (publishes "Rachel Carson's Hazardous Waste News"), 410-263-1584
· National Coalition Against the Misuse of Pesticides, 202-543-5450
· Toxic Substances Control Act Hotline (U.S. EPA), 202-554-1404
· Consumer Product Safety Commission, 800-638-2772
1. American Council of Government Industrial Hygienists. 1993-94. Threshold Limit Values for Chemical Substances, p 2.
2. Ziem, G. and B. Castleman. 1989. "Threshold Limit Values: Historical perspectives and current practice," Journal of Occupational Medicine 31:910-918.
3. Ziem, G. and B. Castleman. 1988. "Corporate influence on the Threshold Limit Values," American Journal of Industrial Medicine 13:531-559.
4. Roach, S.A. And Rappaport, S.M. 1990. "But they are not thresholds: a critical analysis of the documentation of threshold limit values," American Journal of Industrial Medicine 17:727-753.
5. Castleman, B., and G. Ziem. 1989. Guest editorial: "Toxic pollutants, science and corporate influence," Archives of Environmental Health 44: p 68.
6. Havey, B., and B. McCreary. Toxic Times Newsletter.
7. Interior Landscape Plants for Indoor Air Pollution Abatement, Sept. 1989, p. 18.
8. Leiss, J. 1995 "Home Pesticide Use and Childhood Cancer": American Journal of Public Health 85: 249-252.
9. Casarett and Doull's Toxicology: The Basic Science of Poisons, Chapter 4
[January 1997 edition, updated July 2000]
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