HEAL of Southern Arizona
Medical Care for Those with MCS
What is medical care for MCS? The most important care is to avoid the substances that make you have reactions. See Primer. After that, there is no cure for MCS. Doctors and patients have developed protocols that may help to strengthen the body so that reactions are not as common or as strong. Some treatments include detoxing by sauna and herbs, supplementing with vitamins and amino acids, allergy shots, and oxygen therapy. Often those with MCS have ME (Myalgic Encephalomyelitis), Lupus, MS, or Lyme disease. Improvement in these underlying conditions may reduce reactions.
Standard Medical Care For routine allopathic care or care for other medical conditions it is difficult to find MD’s who are familiar with MCS, yet your MD understand that you may react to medicines, that you need a lower dose of medicines, and that you need a scent and toxin-free place to meet them. You need to find an MD that is familiar with and accepts MCS as a condition. Explain that you do not expect him or her to treat your MCS, just to be able to accommodate it. Ask your physician if they accept the condition as real. If not, they will not be able to accommodate you. Find another doctor. Physicians who treat ME are often familiar with MCS.
Naturopathic Physicians and other non-allopathic caregivers are more familiar with MCS and more likely to not only accept it but be able to treat it. These doctors, including homeopathic and chiropractic doctors, are familiar with micronutrients and detoxing.
MCS Hospital and Emergency Access
Hospital care that helps others can do great harm to people with Multiple Chemical Sensitivities (MCS). Special precautions must be taken when treating chemically sensitive patients to prevent severe reactions and facilitate healing. Well-ventilated facilities with fragrance-free, smoke-free personnel using least-toxic materials, procedures, and cleaning products can help people with MCS avoid severe reactions when seeking medical care.
Emergency care is a serious problem: during a crisis, people with MCS may not communicate effectively, and emergency personnel may be unaware that routine practices can be harmful, even life-threatening. Exhaust from idling emergency vehicles, scented products on emergency personnel, and new plastic tubing, for example, may cause severe reactions. In some cases, people with MCS who have complained of odors undetectable to the emergency crew have been mistakenly confined in psychiatric facilities.
Do not panic – many people with MCS have had surgery and hospital stays. They report hospitals will assign private rooms for those with MCS. Asking for unscented personnel and not to use cleaning products has not been a problem. Have someone bring into your room tolerable food and supplements. If it is an emergency, you can call someone to help with these things later.
You may find yourself in a medical facility that is causing you reactions. Wear your carbon mask. Try to remain calm and think if the reaction is going to be worse than not seeing the doctor. If it is leave. If it is a critical condition and you must stay there, try to relax and accept that you are going to also be having the reactions. Try to explain what is happening and what want to be changed. Don’t say you have MCS or are sensitive, but that you are having a specific reaction. For instance – “I don’t understand what you are saying because your perfume is making me very dizzy and nauseous. Can I talk to someone without perfume?”
To Prepare for a Medical Emergency or Hospital Stay in Advance
• Have and wear a carbon mask.
• Wear a medic alert bracelet.
• Have your doctor complete the “MCS Accommodation Letter” (below), and have it with you, in your wallet, with your insurance ID card.
• Locate an “advocate”, someone who can enter the hospital, understands your specific sensitivities, and agrees to be there in an emergency or hospital stay. If necessary, this person can speak for you – Give them the medical power of attorney (below).
If you are going into the hospital for a planned procedure you can make more preparations in advance, including:
· Finding out which hospitals in your area are most familiar and accommodating for those with MCS.
· Discussing your needs with the hospital and arranging for a private room and to bring those things for yourself that you will need. Preparing a kit of the personal things you want to have while there.
· Determining what anesthetic, sutures and other materials you can use and arranging to have them available.
MCS Accommodation Letter
Dr. Ann Campbell: RECOMMENDED APPROACH TO CARE OF HOSPITALIZED PATIENTSWITH MULTIPLE CHEMICAL SENSITIVITIES (MCS)
Also From Dr. Campbell:
The MCS Awareness Letter was written primarily for use in outpatient and even non-medical situations. It is designed to be copied onto your physician’s stationery. Feel free to adapt the format to whatever the letterhead requires. You may also wish to modify the content if your MCS requirements are different from those listed.
![Text Box: [Doctor’s Letterhead] TO: All service providers RE: ____________________________________ The above named patient has a condition known as Multiple Chemical Sensitivities (MCS). Kindly read this carefully and do your best to comply as fully as possible. You may already know that hospitals and service providers are required to accommodate special needs under the Americans with Disabilities Act. Please note that MCS can be life-threatening even though the usual signs of a medical crisis aren't always apparent until extensive damage has already been done. BASIC STEPS TO ENSURE THIS PATIENT'S SAFETY DURING TREATMENT: 1. 1. Pure airAssign patient to a secluded room or small enclosed area as quickly as possible, isolated from other people, and when possible, a small room with a window that opens to fresh air. An isolation room is often a good choice.Avoid new furnishings, paint, freshly shampooed carpet, air fresheners, new plastics and latex. Avoid alcohol. (Zephiran is the preferred alternative to alcohol for skin antisepsis; hydrogen peroxide is sometimes adequate). Anything with fumes or odor that you can smell will most likely be problematic for this patient.Assign staff to this patient who are not wearing cologne or after-shave and tend to use fragrance-free (f.f.) products. (Note: most shaving creams contain fragrance. Make oxygen available as soon as possible. (Patient may have brought tubing; if not, older tubing is preferable to newer.)2. Expedite treatment.MCS patients are seriously compromised in public buildings. 3. Don't judge patient based on your own sense of smell. Healthy people often can't smell chemicals that harm MCS patients. 4. Write down any instructions you want the patient to remember. Chemicals impair brain function and memory in MCS patients. Don't expect the patient to remember, no matter how clearly you give the instructions.5. Approach the patient in a calm and supportive manner. Chemical exposures can cause MCS patients to become anxious, depressed, confused, or even panicky and disruptive. Pay attention to what the patient tells you about immediate needs. Repeat back the main points of what you heard and explain what is being done to accommodate the situation. 6. Flag patient's chart as an MCS reactor. If patient is to be hospitalized or undergo surgery, assign a patient advocate or social worker to coordinate the extremely daunting preparations for ensuring optimal safety from chemical assaults. PRIMARY DRUG SENSITIVITIES: __________________________________________________________________________ __________________________________________________________________________ __________________________________________________________________________ ______________________________________Physician's signature Date](hospital_access_files/Accommodation-Letter.jpg)
Hospital Packet
HEAL of Southern Arizona also has a “Hospital Packet” which includes a copy of the Hospital Accommodation Letter and its Suggested Uses, the Medical Power of Attorney form, a copy of the three resources referred to above, additional information such as a copy of “Going to the Hospital”, and an article from the Spring 2002 Human Ecologist Magazine. To order the packet contact Heal of Southern Arizona.
Also see MCS Accommodation Guidelines for what has been done to promote scent free hospitals.
Treatments and Protocols and Medical Information
There is no cure for MCS. Avoidance of airborne chemicals and molds, pollens, and possibly EMF’s, and high elevations will help with the symptoms that are caused by those things.
There are protocols and treatment ideas given on websites and by people with the disease. Everything from prayer to blue-green algae has been attributed to cure. There are some things that have helped and some people have been able to resume their previous lives. Many with MCS do ok after achieving a less toxic home and lifestyle. It is important to understand what is MCS, or what symptoms are caused by exposure to chemicals, and what are underlying medical conditions such as ME. Those who have had one big chemical or mold exposure, but are healthy otherwise have a good chance of complete recovery or at least of being recovered in a safe environment.
Extreme caution should be taken when considering treatments. Many people with MCS have stories of “treatments” that made them worse. Talk to people who have tried the treatment. Try not to wear rose-colored glasses when researching a treatment – be skeptical. Ask how long the person was better. Often people report improvement, but it is only temporary. Find out what the overall cost is in money and energy. Find out if the recovered patient is making money on the treatment. A treatment that is ok for an otherwise healthy person, may not be good for a person with other conditions. For example, detoxing by sauna and herbs is very debilitating and should not be tried by those with ME unless under medical care. Treatments and protocols come and go in popularity, so it is good to monitor the idea for months or a couple of years.
Chemical Exposures - Low Levels and High Stakes (PDF), Second Edition, Nicholas A. Ashford Claudia S. Mille. The complete book is free online, written in 1998. It was considered the definitive source at that time and still highly informative.
Clinical Ecologists
MDs who specialize in treating MCS are called clinical ecologists. The American Academy of Environmental Medicine is their organization. Look on their site for members in your area. The Treatments mentioned on the web page of The American Academy of Environmental Medicine are Low Dose Allergen Therapy LDA, and intravenous detox and micro-nutrient therapy. Low Dose Allergen therapy is the same as allergy therapy as given by allergists. The patient is tested for sensitivity to many substances including the most common chemicals and allergens and possibly foods. There is then a series of small shots containing a homeopathic amount of the substance, just like for hay fever. The difference is that in LDA therapy for people with MCS the amount of the substance is not increased, as that was seen to make patients worse. This therapy has been found to make people worse about 30% of the time, and may not make you better. Use caution if deciding to do this therapy, maybe asking for just a few or even one material at a time. If you have had allergy treatments using this method and it helped, it may work for you for chemicals. Clinical ecologists can test for the presence of toxins in your body. There are so many possible toxins that they must have some clues to help them narrow those down. Mercury is often present and a Clinical ecologist can determine that.
The website has a locator by state or country. Not every MD who is familiar with MCS is in the AAEM. Other doctors who are knowledgeable in treating MCS, some of whom have MCS or have a relative with the condition. Dr. Ann Campbell is in New Mexico, Dr. Kristie Mattson is in Tucson.
Environmental Health Center-Dallas, “A complete testing and treatment medical facility for environmentally-sensitive adults and children.” The EHC-D was the first center for MCS and its founder DR. Rea is considered the father of Clinical Ecology. Dr. Rea is no longer available, but the center is still open and considered by many the Mecca for those with MCS. The protocols mentioned on the web are Allergy Testing, Immune Support, Nutrients, and Detox.
Integrative Medicine
Integrative medicine MDs and Non-allopathic doctors are often helpful and understanding of MCS. Naturopaths treat the person, not the disease. They work largely with chronic illnesses. They are critically aware of micronutrient therapy, immune support, and detoxing. Those are the basic treatments for MCS. They do not rely on chemical drugs, that will not be tolerated by those with MCS.
Chiropractors and Homeopathic physicians may also be helpful as they often treat chronic illnesses and tend to be more open minded about MCS.
Counseling and Emotional Care
People with MCS often need emotional and counseling support. Having MCS involves loss of self-identity and often friends, hobbies, and work. Counselors for those with MCS need to have familiarity with, and acceptance of. MCS. They also need to provide services either by phone or in a tolerable environment. Training for counselors in the form of a Power Point presentation - COUNSELING CLIENTS WITH SENSITIVITIES: A GUIDE FOR THERAPISTS.
MUSES
MUSES is a type of environmental illness that is caused by carbon monoxide poisoning, have a treatment that is highly effective. If you are sensitive to light, sound, and temperature in addition to chemicals and other odors, you may have MUSES. This web site MUSES has a screening to see if you may have this type of MCS.