Treatment protocol for Multiple Chemical Sensitivity/EI/ME/CFS/CFIDS

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. 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 known as chronic fatigue immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME), is same underlying condition as MCS, just with a somewhat different set of symptoms. MCS is also known as Environmental Illness (EI). Chronic Inflammatory Response Syndrome (CIRS) may also have some overlap with these conditions.

At a high-level, the underlying problem in most people with MCS seems to be an overloaded detoxification system, which in turn disturbs 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.

Although I'm not convinced that everyone with MCS also has CIRS, I do believe there is some overlap, particularly with regard to neural inflammation. You may want to review the CIRS symptom clusters to see if it might apply to you.

Here's the first phase of 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 HEPA filter, media (carbon or equivalent), motor and ducting works great for some people. HEPA filters remove most particulates, and carbon removes most chemicals.

   
   

   I've tried a half-dozen or more different HEPA filters. The ones I like best are the Health Mate series made by Austin Air.

   While 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).

   Filters don't work for everyone. Some of us need fresh air; sometimes coastal, sometimes desert, sometimes mountain, sometimes freezing cold. If you live in a smoggy, polluted area, if you want to heal, you may need to move.

   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 keep your time in the store 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 someone close to you 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

   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. Even today, 20+ years after reversing my MCS, I still only drink glass bottled spring water.

   Use of carbon-filtered water is best limited to bathing, cooking and laundry — not drinking.

   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 type of water filter (and what I use today) are the ones with three separate filter cartridges (usually a pre-filter, then a fine particular filter, and finally a carbon filter for chemicals). These often have hard plastic housings, which aren't ideal, but they're much less expensive and can still be very good. Reverse osmosis type filters can also be very good, but if you get one, make sure it doesn't use a storage tank. I had one with a storage tank years ago, and the tank was eventually contaminated with bacteria. Awful!

   Avoid water and other pre-packaged liquids sold 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 ("spray-free"). 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 just 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 from a health perspective, 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, bread, grains, etc) is the most important part of choosing a diet. After that, the details often vary from one person to another.

   

   My favorite is the GAPS diet, which is an elimination diet that eventually ends up being similar to Paleo. The early phases of GAPS consist of bone broth and meat. As you unmask, and as neural inflammation comes down, you can 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 if your digestive system isn't functioning well. Juicing helps to make the nutrients in food more easily absorbable. There are surprisingly large 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 better and different than with conventional juicers (like Omega or Champion), even the big commercial versions. Here's a video of my Norwalk in action:

   
   

   Yes, it's noisy. And expensive. But it's also the best, and there are times when only the best will do.

   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. In addition, reduce the number of times a day that you eat, with just once/day being the eventual goal. This can be difficult at first, especially 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, and why some people with MCS seem to have such a sensitive sense of smell. 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, which is a foaming agent that can also cause immune system disturbances (including canker sores!).

   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 seem 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), or alkaline ionized water. I use the KYK Alkaline Water Ionizer, with a separate 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. A pH below 6.5 warrants action.

   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. Research and clinical experience appear to show that 90% or more of people with MCS are deficient in Magnesium. Epsom Salt baths 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. If your skin feels irritated during or after the bath, try decreasing the amount of Epsom Salts you're using.

   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, non-toxic, mold and dust-free, 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, lighting, 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 helps maintain 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 three most useful and actionable tests I've found are Red Blood Cell (RBC) Minerals, Urine Organic Acids (OAT), and GI-Map. They can directly determine a significant set of supplements that are likely to be helpful.

    When supplementing, if you are sensitive to pills, try taking capsules that contain just one compound at a time, rather than using complex mixtures. That also allows you to control dose more easily. I'm very sensitive to herbal mixtures, essential oils and the like. They contain quite a few different chemicals, so I would recommend avoiding them, particularly in the early days of treatment.

    Use capsules instead of tablets when possible. Capsules dissolve more easily and completely than tablets.

    Use only top-quality brands, and watch for unnecessary additives. Thorne is the highest-quality brand I know of. Jarrow and Metagenics are also very good. Now, Doctor's Best, Cardiovascular Research, Bio Tech, Carlson's, and Life Extension are all good. MRM and Solgar are fine. I try to avoid Nutricology, Allergy Research Group and Twinlab.

    For hard-to-resolve deficiencies, liquid mineral supplements may be needed instead of capsules. The liquid versions are absorbed more easily and quickly.

    If you react badly to a particular supplement, try a different brand or form. If you still react, take a break and try again in a month or two. One thing I found is that early in the process, I was unable to tolerate the very supplements I needed. I learned that's often part of the healing process; that as you get better, you can tolerate more.

    Re-test every three to four months or so, to track progress and avoid letting your levels get 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 was an important part of my path to wellness, even though it was a long, long road.

    Test for and, if necessary, clear, heavy metals, such as cadmium and mercury. Heavy metals are toxins that can significantly disrupt many biochemical processes in the body.

    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 your heavy metal levels are unusually high, avoid chelation drugs such as DMSA or DMPS when you're not stable. I've been through chelation several times, and each time it made me much worse, 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. I eventually had better luck with IV EDTA, but it was administered with an IV mineral supplement.

    Hormone tests are also important, especially thyroid, due to the body temperature issue I mentioned above. The DUTCH test, in particular, provides lots of useful and actionable information. However, very often low hormone levels will self-correct after mineral levels come up to normal and inflammation is reduced. Testosterone replacement, aromatase inhibitors and high-dose cortisol, in particular, should be undertaken with great care in those with MCS.

11. Anti-Candida

    It's hard to generalize in this area, other than to say that for people who are mold sensitive or who have had gut test results showing Candida overgrowth, one or more rounds of anti-Candida treatment are generally worth the effort. The way I prefer to approach this is to start with a short high-fiber colon cleanse, for example using psyllium and bentonite. The idea is to try to flush out the bulk of the Candida early in the process.

    After the cleanse, start on an anti-Candida diet. Some 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 you're reasonably stable on the diet, add Nystatin. 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. I try to stay away from drugs such as Diflucan and Sporonox that can enter the blood. There are extreme cases where such drugs are warranted, but it's rare.

    If you are sensitive to Nystatin, you can 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 the additives that are often mixed into commercial capsules and tablets. Using the powder also treats your mouth and throat, not just your gut. I've taken up to a teaspoon of the pure powder at a time, for months.

    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 (where I spent more than a month), uses saunas as a top-line treatment. The theory behind saunas is that sweating is one of your body's detox mechanisms; sweat carries toxins out of the body. In a hot environment, toxins are mobilized from your fat into the blood, and from there can be carried out by sweat and by the moisture of your breath from your lungs. The heat of infrared saunas penetrates more deeply into the body, in theory causing toxin mobilization from deeper tissues.

    Unfortunately, in spite of trying them many times, I ultimately found saunas to be too severe in the early process of healing. One issue is that sweat carries nutrients out of the body, too, not just toxins (although a before-and-after sauna supplement program can help mitigate that issue). I do think saunas 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 conventional saunas worked better for me than 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 you may want to look into it at some stage.