I developed multiple chemical sensitivity (MCS) in the mid-90s. After seeing tens of doctors and spending literally hundreds of thousands of dollars on testing and treatment, I was finally able to 80% cure myself. I thought others might benefit from some of what I learned in the process. Along the way, I've talked to many people who have had MCS; very few have made this much progress toward a complete reversal.
As you may know, there's a school of thought now that says chronic fatigue syndrome (CFS), also now known as chronic fatigue immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME), is the same underlying condition as MCS, just with a somewhat different set of symptoms. Chronic Inflammatory Response Syndrome (CIRS) may also have some overlap here.
There's a lot of background that's too time consuming to share in a forum post like this, so I'm only going to stick to the basics. If you'd like to know more about the hows and whys, please ask.
At a high-level, what I can say is that the underlying problem in most people seems to be an overloaded detoxification system, which in turn messes with your immune system and mitochondria, and makes you very sensitive to many things in the environment, ranging from foods to pollen. Not everyone with CFS has MCS-like symptoms.
It's important to be aware of "masking." What can happen is that when you are regularly exposed to high levels of environmental toxins, you develop a tolerance for them. The result is that you don't experience symptoms immediately on exposure, so it becomes difficult to make the connection. Instead, you're just tired all the time, or you have constant headaches, stomach upset, or any of the other myriad of symptoms. Then, once you're unmasked, you more readily react to things in your environment. Although it may feel worse, unmasking is actually a very positive sign of progress.
Here's my suggested treatment protocol, in order of priority. One high-level principle: the sicker you are, the more strict you need to be.
1. Clean air
Filtration with the right combination of filter media, carbon, HEPA filter, motor and ducting works great for some people. Others need fresh air; sometimes coastal, sometimes desert, sometimes mountain, sometimes freezing cold. When driving, usually I try to keep the "recirculation" mode of the car’s ventilation system enabled, to minimize fumes from nearby vehicles. You may also find a carbon filter for the car to be useful (there are portable models that can be powered from a lighter outlet).
Stay away from stores and other buildings that have heavily toxic air. WalMart, as well as most drug, hardware, garden supply and auto parts stores are particularly bad. If you can’t avoid going in one, it’s a good idea to use a mask with a carbon filter, and then keep the time to an absolute minimum. Also, avoid the most toxic aisles, such as the ones containing products with pesticides (garden) or perfumes (laundry). If you don't have another option, try holding your breath and walking fast!
If you or someone in your family has been exposed to a heavily toxic environment, you might find that they need to shower and change clothes before coming near you. I had a chemically sensitive friend who, if I wasn’t very careful with what I was wearing, just giving her a hug could cause her to get a severe headache and nearly pass out.
2. Clean water
Use of carbon-filtered water is best limited to bathing, cooking and laundry -- not drinking.
Drinking water should be glass bottled spring water. I drank Evian water in glass for years, and did well with it, however the options depend a lot on where you live, and they are often limited and expensive.
You may need to test cooking with filtered water. Most people usually to do OK with it, because heating the water after filtering seems to remove any lingering chemicals or odors; plus, the food itself will add water-soluble substances to the water, which usually overwhelm any minimal residue that may remain.
The best water filtration system I’m aware of is made by General Ecology. I’ve used both their whole-house model called Spark-L-Pure, and their point of use / under the sink model called the Seagull IV. The ideal scenario is to use both, so the water at the kitchen sink is double-filtered. Be sure to change the filters at regular intervals. If you find the filter housings to be even a little slimy when you replace the filter, the housing should be cleaned with bleach first, and then rinsed until no residue remains. In some areas with particularly dirty water, using a pre-filter before the whole house unit can help extend the time between required filter changes (easily paying for itself as a result). One nice feature of the General Ecology units is that as the filter modules fill up with contaminants, the water remains pure, but the flow decreases. This is better than other technologies where the flow stays relatively constant, but water quality steadily declines.
Another system (and what I use today) are the ones with three separate filter cartridges. These usually have hard plastic housings, which aren't ideal, but they can still be very good.
Avoid water and other pre-packaged liquids in plastic bottles. Even the so-called “hard plastic” leaves a residue in the water that I can taste and smell.
3. Clean food
Prefer organic food with no pesticides. Consider buying from local farmer’s markets. Prefer food that is grown locally to that which has been transported a long distance; the latter is often chemically or radiologically treated in some way to make the transportation possible. In addition, for genetic reasons, people with European heritage often don’t process the natural chemicals very well in foods that originated in the tropics.
Prefer food that doesn’t come in a package; fresh is best. Minimize how long you keep leftovers. Subtle decay (mold) can begin after even one day, even for food kept in the refrig.
4. The right diet
This is an area of huge variability from one person to another.
I’ve tried many different diets over the years, and I’ve read intensively on the subject. Based on that experience, my view is that for most people (though not everyone), the strict vegan / vegetarian diets are not a good way to go. Unfortunately, they often leave out a number of key nutrients (such as B-12), while also loading up substances that humans did not evolve to digest well, such as grains. I was vegan (macrobiotics) for quite a few years, and in retrospect I think eating that way actually made me worse.
Eliminating sugar, fruit juice and refined carbs (pasta, lots of bread / grains, etc) is the most important part of choosing the right diet. After that, the details can vary from one person to another.
My favorite is the GAPS diet, which is an elimination diet that ends up effectively being a variant of Paleo. The early phases of GAPS consist of bone broth and meat; you can then add other foods in slowly, over a period of weeks, as long as you can tolerate them. One good thing about GAPS is that it's also anti-Candida. For someone who is mold sensitive, an anti-mold diet is extra important. Avoid foods that often have mold toxins associated with them. For example, peanuts (which contain aflatoxin from mold) should be avoided like the plague.
Vegetable juicing can be a helpful part of the overall plan, particularly for people who have digestive systems that aren’t functioning well. Juicing helps to make the nutrients in food more easily absorbable. There are huge differences from one brand of juice machine to another. The best one I know of is made by Norwalk. It uses a two-step grind-and-press technique. The juice tastes surprisingly different (and better) than with conventional juicers, even the big commercial variety.
In addition to a principled approach to diet, you should also work to identify and eliminate foods that you are sensitive or allergic to. If you are sensitive to almost everything, a good strategy is to rotate foods (don’t eat the same things for more than a few days in a row), while also reducing the number of times a day that you eat, with just once/day being the eventual goal. This can be difficult at first, esp. socially and if you're coming from a high-carb diet. However, being on GAPS for a while usually makes the transition pretty easy from a hunger perspective, as blood sugar swings (and the associated hunger) are reduced.
5. Eliminate toxic substances from anything you smell, put in your mouth, or put on your skin
The olfactory nerve provides a direct path from the environment to the brain; that’s one reason why some odors can have such a large effect. No perfumes anywhere, including laundry soap, deodorant, bath soap, candles, mouthwash, etc. Not just on yourself, but on those around you, too.
New clothes have sizing (which contains formaldehyde) on them to reduce wrinkles; be sure to wash them well first before wearing. Some clothes need to be washed several times. If they still have a chemical odor after washing several times, they may not be usable.
Avoid synthetic fabrics: no polyester, nylon, rayon, etc. Cotton, silk and wool are fine for most people, but testing is always a good idea.
Use toothpaste that’s free of both fluoride and sodium lauryl sulphate (a foaming agent that can also cause immune system disturbances).
Avoid skin creams unless by prescription.
At the dentist, ask them to skip the fluoride treatment. For hygienists that use abrasive cleaners instead of the newer sonic type, ask them to use a pure pummus-based abrasive material when cleaning your teeth.
Avoid hydrogen peroxide until you’re absolutely sure you aren't sensitive to it – it requires a special selenium-based enzyme in order to be properly metabolized, and selenium is a common deficiency in the chemically sensitive.
6. Improve elimination of toxins
The body processes toxins better when it’s in a slightly alkaline state and when its temperature is at or close to 98.6. A body temp 2 deg or more below normal can impair the function of many important enzymes. Yeast also seems to grow better in the body when its temperature is slightly low. Body temp is controlled by the thyroid gland, so it's a good idea to make sure your thyroid hormone levels are normal.
To temporarily improve alkalinity, use things like Tri Salts, Alka Seltzer Gold (not the usual one in the blue package; the Gold version is aspirin-free, and was huge life-saver for me), alkaline ionized water (I use the KYK Genesis water ionizer, with a pre-filter; it’s not perfect, but it’s the best one I’m aware of).
If you're in an acid state, that’s a strong leading indicator of poor health, so it’s a good idea to track progress every week or two using pH paper to test saliva. Look for trends that are related to dietary changes.
Consider trying coffee enemas. I know it sounds awful, but many people swear by them.
If they’re going to help, you should know within the first two or three times. In some people, the effect can be semi-euphoric at first, as the toxic haze lifts. Even people who are allergic to coffee can usually handle the enemas. It’s uncommon, but some people feel stimulated or over-stimulated afterwards; this can happen when the coffee is held too long or is made too strong. It’s usually due to a detox reaction, rather than being from the caffeine. If you can tolerate exercise, doing a coffee enema afterwards can increase its effectiveness, since the exercise tends to drive toxins out of the fat into the blood. Once in the blood, the toxins can be filtered by the liver if it’s healthy enough or is given a boost.
Consider trying Epsom salt (magnesium sulphate) baths. Use appx 250 grams of Epsom salts in a tub of warm water, and soak for 10 to 60 minutes. Can also be an effective pre-bedtime muscle relaxer. Magnesium is needed for many detox reactions in the body, and raising the body temperature slightly from the warm water amplifies the effect. They often need to be done every day for at least 5 or 6 days before you will be able to tell if they’re helping.
As with most of these ideas, if they make you feel worse, you should not try to “push through.” Instead, back off and consider trying again later (for me, “later” sometimes meant years).
7. Find or build an oasis
When you're feeling poorly, it’s very helpful to have a place you can go where you can start to get unloaded. A clean, minimalized bedroom is often the best place – but it’s not the only option. One advantage of using the bedroom is that it’s also the place where most of us spend a significant fraction of our lives; so being able use that time to unload is nice. Other options might be away from the house, such as a spot on a beach or up on a hill. Close to home is important, though, so you can get there quickly when you're not feeling well.
When building an oasis, take into account all sources of stress, including noise, temperature and even colors and textures. The goal is to have a place where you want to spend time, and where you feel as relaxed, healthy and happy as possible.
8. Look for a way to quickly reduce symptoms, even if it’s just temporary
When you're having a reaction, if there’s something you can do that will quickly and significantly alleviate your symptoms, it can provide a sense of control that often leads to hope for the long-term.
For me, this was Alka Seltzer Gold – but different things work for different people. Other possibilities include: Tri Salts, breathing pure oxygen, putting your face directly in front of the output of an air filter, taking a walk near the ocean, certain breathing techniques, bio-feedback, self-hypnosis, exercise, eating certain foods, etc.
Experiment until you find something that works. Since it may come down to a matter of degree, keep a notebook if it helps.
9. Get enough sun
Vitamin D, which is produced by the action of the sun on the skin, is critical for immune system health. People who spend most of their days indoors, which seems to include a majority of us these days, don’t get enough sun and tend to have low Vit D levels as a result. If you can’t tolerate being outside, or in the winter, consider supplementing with 5000 to 10000 IU of Vit D-3 per day (avoid D-2, which is the only type offered by prescription in the US, and is also the most common supplement form). Vit D is a more effective immune booster than Vit C, and often more easily tolerated by the chemically sensitive. The risk of skin cancer from the sun is overblown, particularly if you avoid burning; the risk of other types of cancer that are prevalent when Vit D is low are much higher and more dangerous.
10. Get and use the right kind of medical tests and supplements
The two most useful and actionable tests I’ve found are Red Blood Cell (RBC) Minerals, and Urine Organic Acids. They can directly determine a significant set of supplements that are likely to be helpful.
If you are sensitive to pills, try supplementing just one mineral at a time.
Use capsules instead of tablets when possible.
Use supplements that contain just one mineral, rather than multiples, so you can control dose better and eliminate any that cause problems.
For broad or hard-to-resolve deficiencies, liquid mineral supplements may be needed instead of capsules.
Re-test every three to four months or so, to avoid getting his levels too high.
This process definitely takes some effort and commitment for the long-term; when you’re really sick, it can take three to five years for all of the levels to correct – although luckily it’s usually less for kids.
I believe following this approach is one of the main things that helped me to eventually get well, even though it was a long, long road.
Some docs believe the hair mineral test is enough; while it’s OK for detecting some heavy metal conditions, it’s not useful for regular minerals.
Unless the heavy metal levels are unusually high, avoid chelation therapy when you're not stable. I’ve been through chelation several times, and each time it makes me much worse at first, often for 4 to 6 months or more. The problem is that the chelating agents pull healthy minerals out along with the unhealthy ones – so if your healthy mineral levels are already low, chelation can precipitate a crisis.
Hormone tests are the second most important (esp. thyroid, due to the body temperature issue I mentioned above). However, very often low hormone levels will self-correct after the mineral levels come up to normal.
11. Drug treatments
It’s hard to generalize in this area, other than to say that for people who are mold sensitive, one or more rounds of anti-fungal medication are generally worth the effort. The way I prefer to approach this is to start with a relatively short high-fiber colon cleanse type diet, for example using psyllium and bentonite. The idea is to try to flush out the bulk of the yeast early in the process.
After the cleanse, start on an anti-candida diet. Many people will have a short “die-off” phase after about a week on the diet. If the die-off ever gets too unpleasant, don’t try to push through it; back-off instead (coffee enemas can help reduce the impact of die-off).
Only after life on the diet is reasonably stable, add in an anti-fungal agent. In most cases, I’ve found Nystatin to be the best choice. It kills yeast on contact, rather than having to be absorbed by them. It also has the advantage of not passing into the blood from the gut, so it’s relatively non-toxic. For more serious cases (such as a yeast infection that has been proven to be in the blood), drugs such as Diflucan or Sporonox may be warranted, but they are pretty extreme, and have the potential of serious side-effects, particularly in kids.
If you are sensitive to Nystatin, start with a dose about the size of the head of a pin, and slowly work your way up. I prefer the straight powder form of the medicine, since it makes the dose easier to control, and since it's free of contaminants (including intentional ones) that are often mixed into commercial capsules or tablets.
You may have to repeat this treatment twice a year or so, until your immune system normalizes. Staying on an anti-candida diet is important.
12. Sauna and oxygen therapy
The well-respected Environmental Health Center in Dallas often uses saunas as a top-line treatment. However, for me saunas were too severe, particularly early in the process of healing. I do think they can be effective later on, when you get to a stable point and feel ready to reach for the next level of wellness. I found I did better with conventional saunas than with the far-infrared variety.
I’ve done several rounds and types of oxygen therapy, including exercise with oxygen, hyperbaric oxygen and blood ozonation. In my case, unfortunately they were never effective. However, I know a few people who swear by them, so it is something that may be worth looking into at some stage.
