It is a good idea to maintain a daily journal, at least at first, where you record symptoms and exposures, along with weather, companionship, sleep, food, exercise, pollen levels, urination, BMs, bathing, emotions, skin care, clothing, places, travel, supplements, medication, and anything else you think is important. Patterns often emerge and an illness so overwhelming can become less so when you know more about your own body. You might find what makes you feel better while figuring out what makes you feel worse! Also keep a binder with every copy of every test you have ever had done. Update lists of treatments tried and what the effects were for the future. Doctors do not have the time.
DNA testing (use a fake name and birth date and decline being used in studies if you are rightly concerned about eugenics which has justified the oppression of differently abled people for 2 centuries) is now being introduced as the norm for some Naturopathic Doctors. Checking your genetic liver pathways such as methylation and sulfur can provide a good understanding of MCS as what it currently is believed to be by NDs (in 2014), a liver disease. Other mutations like oxidative stress can be found and treated as well. It helped me immensely. (Saved my life.) See Resources for info on getting DNA tests done.
Blood work tests should always include Lyme, all the trace minerals, liver pathways, thyroid, all heavy metals, immune, hormones, and vitamins. Expect a lot of blood to be taken, so drink a lot of water before the test. Low B12 and low vit D are common, but everyone is different. Please remember that when talking to others with MCS. I often have to explain to be MCS newbies that their results and my results are not the same which is why our supplements and treatments are different. Just because I have a problem they don’t need to expect to have it as well.
Metabolic Functioning Test. In Resources.
Mast Cell Activation Syndrome. As Mast Cell Activation Syndrome is often the cause of MCS, these websites explain MCAS:
The Wikipedia article lists tests that can be helpful in a diagnosis. If you have Celiac disease, RA, MS, other auto-immune illnesses, Lyme disease, IBS, migraines, autism, brain fog, asthma, and other “unusual” health problems, MCAS may be at the root of everything.
Diets that work for Canaries vary so immensely, there is no common ground at all. Wait! Eat organic. Food that has not been chemically treated is a big yes. In the US, GMO food is not labeled, so buying organic is your only way to know it has not been genetically modified. (You cannot tell by the bar code; that is a myth.) Now, in the spring of 2012, the state of Vermont wants to have GMOs labeled but the corporation Monsanto is threatening to sue the state if they try to warn citizens. Monsanto’s threats made Hawaii’s labeling somewhat useless. If you eat meat or dairy, organic, grass fed with no growth hormone is the only way to go as far as I am concerned. Due to the limits on what we can eat, adding chicken or beef broth to foods (we cook rice in that) helps with getting better nutritional value. I fermented kefir and veggies which gives you lots of gut and immune helping probiotics but now they are too alcoholic for my liver, which says something since they have very little alcohol in them.
A lot of Canaries develop food intolerances and allergies. An elimination diet helps you find the problems. In treating my MCS, I gave up different foods. Now I, who had a cast iron stomach, cannot eat eggs, gluten, dairy, beans, canola oil, vinegar, soy, fermented foods (alcoholic for me!), acid foods and most vegetables. It is amazingly frustrating to find anything we can eat. Some people with dairy problems can consume raw unpasteurized dairy or goat milk I have been told. I was vegetarian and vegan for 20 years, which made my copper poisoning and lack of B12 much worse. When I started eating red organic meat and European butter my health improved and my cholesterol went down. Other people have the opposite response. The rotation diet is rather popular now. Read books, see specialists and make changes but, in the end my motto is trust YOUR body.
You can have reactions to fillers and dyes in supplements and medications and if so need a compounding pharmacy.
Exercise is of course very important, but it is hard to find a safe place to do any exercise outside of your nest. The foam yoga mat, plastic core strengthening ball, most neighborhood jogs, mall walking, gym memberships, and the treadmill have to go. Pools are filled with chlorine. However some are now using salt water. You still have to deal with the body and hair products of the other people in the changing room. I have diplegic spastic cerebral palsy which makes standing painful, so running is out of the question, and finding exercise that doesn’t injury me is nearly impossible. Now I use chair yoga and senior fitness DVDs. (Cerebral palsy ages the body very quickly.) Natural rubber yoga mats are available at Rawganique and Abundant Earth, with Heart of Vermont offering great mini-futon exercise mats that are organic. I use those mats also as a body pillow, cold weather blanket (two would make a good sleeping bag), and to put on the flat part of older futons. I have heard that many Canaries walk laps around their room or dance to music. Some lift weights at home.
There are some tests that can show mineral and vitamin deficiencies among other health problems. Trace minerals are often low in Canaries. Diet changes and supplements usually help Canaries. The best tests are not the ones your average doctor will know about. Heavy metal toxicity is an issue with MCS. I’ve had alarmingly high copper levels since I was at least 10. Moly-Cu, vit C and zinc helped lower it. The body thinks copper is estrogen. Copper toxicity is the most common metal poisoning today. Zinc balances it out and as zinc is needed forimmune support, copper steals that. Copper tends to effect hormones, causing symptoms that often look like excess estrogen (which I also had: most farm pollution breaks down into estrogenlike poisons) and bipolar disorder. Lead is another big problem, which often causes rage and violence. Mechanics who cleaned their oily hands in gasoline often have lead poisoning. When there was leaded gasoline, youth violence was much higher. Many “psychiatric illnesses” are toxicity illnesses, food allergies, Lyme etc.
A good doctor should test all the heavy metals. Liver support is a key factor for MCS, which appears to be a liver disease. Phase one of detox usually works: The cells release the stored up toxins, which become more damaging in that state. Phase two where they leave the body is slow or almost nonexistant. This is why detoxing is so dangerous. The toxins roam around hurting you and cannot get out. PMS/PMDD may be an issue of the liver not releasing its own hormones anymore. 1st year burdock roots and dandelion roots in tincture or infusions along with silimarin (milk thistle) pills are very common MCS supplements. Making sure the kidneys and skin are detoxing as well, thus removing the burden from the liver, is important. This is why people with MCS do dry skin brushing, lymph massage, sweating (like exercise in an extra layer of clothing), soak in Epson salts, put castor oil over their liver, and oil pull with sunflower oil. Checking liver functioning should be your health care providers main focus no matter what else is happening. The liver does more than filter. It also stores glucose and if your liver is damaged you may have reactive hypoglycemia and need to eat many small high fiber high protein or fat meals. There are many liver pathways and yours will probably have different issues than mine, but many of us have found that B12 methyl (no other type) clears up brain fog, fatigue and mood swings. My ND gave me a RX for a compounding pharmacy to have injections. Gluathion (RX) is another detoxer, as is N.A.C. (over the counter) which help the liver’s fucntioning, but too much can move you into phase 2 backlog of toxins. The closer to a food source the supplement is (if you are not allergic to the food) the easier it usually is to digest, plus the less chemicals.
Please note that the purity of supplements (such as vitamins and herbs) is unregulated. In Germany, where doctors write prescriptions for St Johns Wort for mild depression or lemon balm cream for herpes, the medications are tested for purity in independent studies. Many people complain about the pharmaceutical industry being dangerous, but forget that supplements are also for profit. Slapping a sticker on a bottle that says “natural” “pure” or “green” means nothing legally. And no one is checking to see what is in that bottle. It is blind faith. If you can, you may want to make your own herbal medicine. Instead of alcohol, you can make (and buy) tinctures that used vegetable glycerine.
Personally my supplements are all in “as close to food” state as possible. I have found that Glutathione pills and B12 methyl injections have helped me more than anything else. Too much Glutathione and I detox too quickly. B12 methyl helps my liver’s methylation passages and because MCS appears to be a liver disease my brain fog, mood swings and fatigue are greatly lessened. These are RX treatments so you need a doctor.
You can have reactions to fillers and dyes in supplements and medications and if so need a compounding pharmacy.
Massage, acupuncture, reflexology and acupressure have helped many Canaries stay relaxed and manage pain. Massage gets the circulation going and releases poisons in your body. That is why some people feel worse after bodywork, so rest and drink plenty of water. Some non-Canaries have mentioned I try lymph gland massage to drain them.
I use a ceramic neti pot for help with the constant sinus problems along with warm showers.
Detoxification when done right can lower your “toxic load” in safe way. On the resource page is a section to links about MCS detoxification and how to handle exposures. Your toxic load gets higher when exposed, and there are some safe things you can do to help lower it again.
However, be aware that you WILL have some symptoms when the poisons are re-released. Be very careful if you do any “detoxing.” What made you sick going in usually makes you sick coming out. Poisons stay in fat cells, which is why some people feel terrible when they lose weight and are told to take a sauna. Hardcore sauna therapy of the L Ron Hubbard type (the sci fi writer banned from France for defrauding so many people out of money who created the religion Scientology) has seriously harmed many Canaries.
There are personal infrared saunas that many respected MCS medical websites recommend. I am guessing that very few Canaries are able to afford them, because very few mention them. I have been in a sweat lodge ceremony. I couldn’t handle the heat and I don’t even know if I made into the fourth round of prayers. A New Age conman, dubbed Death Ray, recently killed many people with his fake “Indian Spirituality” “sweat lodges.”
Walter Crinnion is the leading Naturopathic Doctor focusing on MCS. He says the cause 90% of the time is solvents. His treatment is high colonics and infrared sauna. I have no idea where it would safe with someone with severe MCS like mine to get these treatments.
With any cleanses, talk to your trusted medical person/people, go slowly and pay attention to your body. I have found that nourishing the organs with herbal infusions, foods and tinctures has been better than detoxing alone.
Dry brushing the skin is something many Canaries have suggested and it does make me feel better after some rest. I rub a natural bristle brush on my skin towards my heart for circulation. Dry brushing is a common treatment. (Online instructions are in Resources.)
Epson salt baths are very helpful for my pain and they detox via the skin, helping my liver and kidneys. Your skin is your largest organ and detoxing it with baths can be very helpful for some. If you do not have a bathtub, you can do foot soaks of the same baths. Without bathtub, I do a final rinse after a shower with Epson salts dissolved in hot water and let it air dry. Others spray Epson salt and water on themselves.
Bentonite Clay or Caster Oil Packs. Put clay on liver, underarms and groin (lymph node areas) for 5 minutes. Rinse off. Rub caster oil on liver (under right ribs) and rinse off in 20 minutes.
Medical Durable Goods
My walker with plastic wheels had a horrid foam padded back rest and vinyl seat that made me dizzy. I hired someone to make a maple seat for the rollator. Many Canaries need oxygen tanks but cannot tolerate the plastic and rubber tubes and face masks. Check the Resources page for information about obtaining ceramic masks. Some people cover their casts in aluminum foil.
Be Prepared with Educational Tools for Medical Staff
There are pdfs in the links section of this website for first responders (fire fighters, paramedics, etc) about the needs of persons with MCS which you could download and keep with you or hang on your door and in your car. Also there you can find many good sheets to hand out to hospital staff and a template of a letter that your doctor should write for you on letter head of which you should keep many copies. See Resources page.
The Emergency Room
If you have to call for emergency services, one of my best friends who works in EMS and is also a volunteer fire fighter gave me info that worked. I had the dispatcher explain to the EMS team coming that I was wearing a mask and why, and that I have paper work of all my health issues with me, along with a Medic Alert bracelet I cannot wear due to the metal making my skin burn like crazy. I explained the worst symptoms of MCS in case I did pass out, lose my nouns, or collapse, they would know why. I explained again to the EMS team when they arrived. They were great about it. EMS workers tend to have high rates of chemical injury themselves. The horrible health crisis of the 9-11 first responders finally highlights an EMS workers’ issue that has been denied: Chemicals make you sick.
Many people have no health care option, ao they go to the E/R for any little thing. Due to that if the doctors think your problem isn’t serious, you will become a GOMER (Get Out of My E/R). The nurses can get in trouble for being nice to you. They have to make it unpleasant so you won’t “abuse” the system again. It’s not personal or about your MCS most likely.
More Experimental Treatments
A famous shamanic practitioner who has trained with many native people and is a psychologist wrote a wonderful essay on why pop culture shamanic “soul retrievals” harm those with PTSD. A Cherokee LSW specializing in trauma advises clients to stay away from New Age shamans. I myself have had three shamanic soul retrievals by graduates of Michael Harner’s school. It seemed to help them feel important, get $100 and play act, but nothing happened for me.
The big MCS “cure” now are versions of NLP. I went to a hippie junior high school in the 1980s briefly where I took classes in NLP for some credits. The nice hippie lady taught us tricks to get other people to think we were in sync with them and had a bond. I think she thought we’d all use that to create a more connected empathic world, but I clearly saw its dangers. (Even at age 13, I was not gullible.) Sadly a lot of conmen and sleazy people learned NLP to get peoples trust so they could use them. It’s not NLPs fault. NLP is just a tool and like any tool the ethical actions of the user depends on what it does. The second part of NLP was basic trance state self hypnosis. I had already been trained in far more powerful forms of this and found NLP to be a pop culture version of bits and pieces of deeper work. I never thought it would go anywhere due to its watered down simplicity and potential for harm.
When a doctor told me to be careful of Gupta and Hopper’s NLP “cures” of MCS, I researched what they were. It’s just flavors of NLP. You trick your body to not notice the exposure. You still are having a heavy toxic load and are still harmed but you have learned to block it out. Heroin does that too. The fear doctors have shared with me is that this is like teaching someone to not notice their signs of cancer so they can continue to smoke. Nothing is cured; you just don’t feel the harm. I want to know when I am being harmed. Self hypnosis and dissociation are very handy tools to have when in a crisis but I would not want to live my life that way. You can hypnotize yourself to think anything is happening. The calming skills you can teach yourself with trance states and altered states of consciousness and self hypnosis can be very healing. I recommend that highly. This is a stressful illness.
Sadly a 13 year old doing the Lightning Course (see http://multiplechemicalsensitivity.wordpress.com/2012/01/04/13-year-old-attempted-suicide-after-lightning-process-course/) killed himself because he couldn’t cure himself.Much of the New Age “If my modality doesn’t heal you, then you are a loser, are blocking it, are not an advanced soul, or want to stay in the illness paradigm” is mixed with things that can work for some people sometimes in some ways. A child wracked with shame for not healing killed himself. That is a the “create your own reality” judgmental side of the New Age movement at its worsy.