# New Here. I have CFS and MCS



## livinwithmcs (Oct 11, 2003)

Hello. I have CFS caused by MCS (Multiple Chemical Sensitivity).Last summer I was really in bad shape but am much better now due to detoxification therapy and changing my home and work environments to one that is as non-toxic as possible. This included eating an all natural (no preservative, artificial ingredients, etc.) diet. These days I no longer have the chronic exhaustion, muscle twitches, dizziness, etc. Although I do still have some sore joints, muscles etc. with the changes in weather.Anyway just wanted to say hello. I'm going to go have a look around now.


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## Susan Purry (Nov 6, 2001)

Hi, and welcome







Glad you found us! I read somewhere about some cases of CFS being _caused_ by MCS, and some cases of CFS being _triggered_ by MCS. Do you think the distinction is important?I'm glad you're feeling better these days, without the fatigue and neurological symptoms. What detoxification therapy did you undertake?


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## livinwithmcs (Oct 11, 2003)

Thanks for the welcome. Actually many people don't realize that Fibro/CFS and MCS are all caused by the same thing. Chemical exposure.It all depends on who diagnoses you, which diagnosis you end up with.Doctors who's specialty is arthritis will diagnose Fibro, Allergists will diagnose CFS and Environmental Medicine doctors will diagnose MCS.It really is the same illness, just has different labels.As far as my detox program which was prescribed to me by my Enviromental Medicine specialist there are 3 phases. It's all about reducing your "total load".Think of it like this. Your body is a cup. You are constantly being exposed to chemicals wherever you go and whatever you do. You use toxic cleaners to clean your house, you sleep on toxic mattresses, use fragrances which are nothing but gasoline, use fragranced lotions, soaps, etc. You eat foods made with pesticides, artificial man made synthetic flavors and preservatives. Your body is absorbing ALL of this stuff. Your body's natural detoxification system (kidney's and liver) are being OVERLOADED! Toxins are coming in faster than they can be eliminated and therefore they start to spill into your bloodstream which in turn deposits them into your muscles and brain. That's why you have the severe pain and aches, brain fog, twitching, chronic fatigue, etc. The more you put in the higher the level of toxins in your cup (body) until you get to the point where the cup starts overflowing. For those that will never be properly diagnosed these toxins start to break down your vital organs and then you become terminally ill, and by then it's too late. Bottom line is this: Your basically being poisoned. If you start to detox before your vital organs are affected you can get better. You will always be sensitive to chemicals, but the DEGREE of sensitivity will improve. I used to get deathly ill, there was even a period when I couldn't walk, and now when I am exposed I usually get a little nausea which is a MAJOR improvement as far as I am concerned. I can still work and function almost like a normal person. But basically my body's total load is reduced so that an exposure does not cause my "cup" to run over. For more info on this you can research Environmental Illness.Ok, now to detoxing. You basically have to start reducing your "total load" before permanent damage to those organs happens. Once your past that point there is really not much you can do.First, you will want to replace as many products in your environment (work and home)with non-toxic ones. I would love to post some links to articles, etc. which would spell this info out for you all but i'm not sure if that is allowed. Basically you should look up "Green Remodeling: Keeping It Clean" and that would give you a good idea of things that are contributing to you being unwell. You should also try to reduce or eliminate any pain medication you are taking because that to is adding to your chemical "total load". Do you have any idea exactly what your medicine is made from? Do you know how many chemical "fillers" are in there? You would be surprised.Once you have changed your environment your immune system won't constantly be bombarded by your environmental toxins (indoor air quality) and you will have already started to reduce your "total load". Your immune system has been working overtime and needs to start getting some rest. Second I started eating only natural foods and ORGANIC fruits and veggies. Organic meaning that they have not used pesticide to grow them, this is very important! Natural foods meaning no preservatives or artificial anything! I eat what everyone else eats, it's just all natural. I eat bacon, ice cream (Breyer's is all natural), you can find an all natural product for everything! I basically shop at Wild Oats or Whole Foods, you'd be surprised how much better all natural food tastes! After you stop eating that other stuff for a couple of weeks, you can actually SMELL the chemicals from foods you used to eat!Next step is to do an elimination diet which will identify any foods you are allergic/sensitive to. I was soooo surprised to find out that I was sensitive to wheat. Eliminating that from my diet helped me tremendously! When your body is sensitive to something your immune system is always on the defensive. This is a big part of CFS/MCS/Fibro. It needs a rest.Next I started a quarterly (every 3 months) bowel detoxification. This is basically an herbal program that lasts for 5-7 days. You can still eat, but you reduce or totally eliminate any meats or meat products during this time. Did you know that you are supposed to eliminate three times a day? That's normal! But how many of you actually do? Toxins sit in your bowel and putrify and then are drawn into your bloodstream which also adds to your toxic overload. This is soooo important. There are many detox programs out there but be careful. You will want to use one that uses only organic ingredients (to keep from ingesting pesticide). Most herbal farmers use pesticides. Each time you do a bowel detox you get stronger because your total load is once again reduced. I also do in conjunction with the bowel detox a kidney, liver or gallbladder cleanse once a year. Opening up your body's natural detox system (kidneys/liver and gallbladder) is key to helping to eliminate the toxins from your body.By reducing your total load you really can tolerate "accidental" exposures better.I know I recently read one post about someone going to a football game or something and they said that they were sick the whole time. If you start to think about everything they had been exposed to in that particular environment it pretty much makes sense. The turf was probably treated with herbicide which is a pesticide and has many other chemicals in it. The majority of the crowd was probably using fragranced products, getl, perfume, cologne, etc. Oh yeah, and the constant going to the bathroom all the time is from your body working very hard to detoxify you, your kidney's are always overflowing! Make sense?Anyway, hope this gives you something to think about. I bet if you all started to pay a little more attention to when you really start feeling worse than you normally do, chances are you recently came into contact with a chemical of some sort. Keep a journal of these times and you will soon make the connection for yourself.


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## M&M (Jan 20, 2002)

I have a question about this theory. Why is it that some people develop illnesses after all this toxic exposure, and some don't? For example, in my family growing up, all 4 of us lived in the same house, ate the same food, used the same cleaning chemicals, etc - Yet only I developed a disabling chronic illness. Why? According to this theory of "overload" we should all be ill with the same exact disease, if I understood you correctly?


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## livinwithmcs (Oct 11, 2003)

Hi! Actually the theory states that each person is different. Individuality plays a role in each of us. Your "total load" just depends on your system. There's tons of info out there. Do a search on MCS Total Load Concept and you will see that much has been written about it. I will send you a link to a great article backchannel so as not to break any rules.


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## M&M (Jan 20, 2002)

First of all, I just wanted to make it clear that I in no way think MCS is a made up illness. I respect it as an illness, one that is caused by the Immune System's response to chemicals in the environment. I know people personally with MCS, and I know how much of a struggle for them it is to leave the house, or have house guests. So, I believe in the disease. That being said, I don't think it is a good idea to talk about various theories as though they are proven facts. There is no factual answer for exactly what causes Fibromyalgia Syndrome or ME/CFIDS. There is no factual reason to believe they are the same disease, nor is there any factual evidence that they are the same disease as MCS. There also isn't any clear factual evidence backing up any one theory as to the specific cause or trigger of MCS. Here are a few statements I've pulled off of the website you sent mebold face mine)


> quote: CAUSES/ *HYPOTHESES* ABOUT HOW MCS DEVELOPS...A number of researchers *believe* that...William Meggs has offered another respected *theory *...Other *theories* on the cause... Albert Donnay (1999) of MCS Referral and Resources has *proposed*...


There are more statements, but these are sufficient to show that all these theories are just that - theories. Please don't think I'm trying to pick on you. I know it probably seems like I am, and I'm sorry for that. I'm not trying to pick on you.  I just think it's dangerous to "lump" everything together, when there is clinical evidence linking ME/CFIDS to viral infections, pituitary malfunctions, and a host of other bodily changes that have nothing to do with chemicals in the environment. I'm very happy for you that you have been able to conquer your ill health, but I also think it's dangerous, and could be discouraging, to other members who have been sick far longer and have been unable to conquer their ill health by watching what they eat, clean with, etc to say "If you would only do this (fill in the blank) you would feel better". That may be true for some, but it surely can't be true for all. I wish you good health, and peace in your heart. I am truly sorry if this is offensive, as it isn't meant towards you on a personal level.


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## livinwithmcs (Oct 11, 2003)

No offense taken. Although the article I sent you was done some time ago and much progress has been made since then, I understand where you are coming from also, so I apologize to those who I might have offended.Itï¿½s true that many people will not be helped by detox. If too long a period has elapsed then permanent damage will have occurred.As far as clinical evidence is concerned there has been progress in that area since that article was written. Thatï¿½s whatï¿½s so frustrating about CFS/MCS and Fibro. There is no one single ï¿½conventionalï¿½ clinical test that identifies these illnesses. Itï¿½s sad that the majority of the medical community wonï¿½t recognize an illness or disorder until a ï¿½testï¿½ can prove it. They said the same thing about MS many years ago. Until a test was developed for it. That actually brings up another point. Many people are also being diagnosed with MS as a last resort because conventional physicians canï¿½t figure out what is going on. I was first diagnosed with Lupus and then MS before the tests came back negative. I was put through many, many tests, most inconclusive. Most people who have been chemically injured though will show abnormal results on their EEGï¿½s. Iï¿½m not trying to offer false hope, just let people know what other avenues to look at. When I was going through all of this I wish someone had told me about MCS and the connection to CFS and Fibro. Most doctors will tell you there is nothing they can do for you or that it's all in your head, maybe you should see a psychiatrist. Glad I didn't follow THAT advice! Have a great day!


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## overitnow (Nov 25, 2001)

Livinwith: I wanted to say how interesting I thought your posts have been. I have made the break with toxins in my home (and in my office) for some years. I am also a recovered IBeezer whose problem was definitely cigarette related. As I understand it, the toxins in that smoke have a similar--and probably more potent--effect than that from the toxified air around us, in releasing free radicals into our systems. There have been several discussions around eczema and IBeezers. I definitely had the nastiest case of that imaginable from exposure to chlorine based chemicals through periods in my work life. That sensitivity continues to this day, although with no contact there is no effect. I have felt that my IBS treatment came from addressing circulatory problems within the brain; however, it does come from a super absorbant grape seed based complex. Given the anti-oxidation that this provides, it is also possible that some, or all, of these conditions relate to free radical damage. Just a thought.Mark


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## HipJan (Apr 9, 1999)

Grape seed extract, in addition being a very good antioxidant, is supposed to be an antiinflammatory and antihistamine. I've been taking it too in hopes that it would help my sensitivity/fatigue.


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