multiple chemical sensitivity, test and suggestions

Discussion in 'Fibromyalgia Main Forum' started by sb439, May 12, 2003.

  1. sb439

    sb439 New Member

    I have multiple chemical sensitivity (arrived gratuitously with CFIDS).
    I had a Great Smokies Liver Detox test done, and came out with fast phase 1 and slow phase 2. This seems to be typical for people with MCS symptoms, so this test may be useful. (very roughly: fast phase one gets toxins into the liver, and slow phase 2 can't keep up getting rid of them, hence the symptoms)
    My doctor told me that GSL actually now have some RNA/DNA test that tests for genetic predisposition for fast liver phase 1 (which would make you more prone to get MCS), so I hope to have that done some time also.
    In the meantime:
    liver phase 1 can be slowed down with: drinking a smallish amount of grapefruit juice daily (unfortunately I'm allergic to that), OR taking oregano oil, or lots of oregano as spice, OR niaciamide 500mg 3 times daily (NOT niacin, which does the opposite, and is toxic if you have too much of it anyhow, check your B-complex for this!!). Moreover by avoiding: all crispy fried, grilled, broiled, barbecued, smoked, burnt food, dark green vegetables (perhaps someone can point out to me what falls into that category ...), brightly coloured vegetables (??), betacarotine, carotenoids, BHT, BHA, TBHQ and niacin.
    liver phase 2 can be sped up by: vit B12, glycine, molybdenum. However, phase 2 involves many different 'pathways', so what helps depends on which ones are slow, hence the test may be useful.

    Susanne




  2. pinkquartz

    pinkquartz New Member

    i am very much Multiple Chemical Sensitive and its on my to do list to find out more info,[ am currently researching adrenals and thyroid and digestion]
    the impact on my life of this disorder has been and still is immense, ..........for me there was some clear triggers involving a mix of toxic chemicals i was exposed to at a time of great stress and when i already had the CFS/FMS but was still active despite being very very ill.
    for me the next stage was becoming unable to walk more than a few yards and therefore needing to use a wheelchair to leave the house.

    Do you know if there were clear triggers for you?
    Which types of chemicals do you have most trouble with and what do you do to cope?

    Your post says to avoid dk. green vegies ???
    Surely not ? i thought that they are good for me.

    do you know why?

    is this too many questions ?

    cheers,
    pinkquartz
  3. sb439

    sb439 New Member

    Chemical triggers for me: mercury, pesticides, dubious paint fumes
    Chemicals with which I have trouble: terpentine, gas (=petrol), chlorine (= possibly taurine deficiency), mothkiller (boy, that stuff made me ill for a week), cigarette smoke, lots of ordinary household cleaners plus various stuff people put in their hair and on their bodies plus other things I can't remember. (most of these seem to fit right in with the above mentioned genetic disposition which Great Smokies are said to test)
    What do I do to cope: avoid contact with everything I react to, air new furniture and clothes in a room I don't use or outside for some time before I use them, ask friends not to wear perfume, etc. all common sense.
    I have with trial and error stopped eating any of the fried/broiled/etc. food category for months now, also take vit. B12, and my sensitivities have got better to some degree, although I don't know why.
    Green veggies: I'll stick to those, at least the broccoli (which looks dark green to me, what do you think?). Remember the above is a list where by just doing some of them all of the time and some of the rest most of the time, you should improve.
    No, I don't know why dark green veggies are no good. It could be that they have a lot of magnesium in, which also speeds up phase one, but then again we (CFIDS/FMS) people often need magnesium, so that's another thing I'm not going to change.
    Like you, I have so many things wrong with me (including adrenals, thyroid, digestion), so it's a matter of making up some taylormade scheme for one self. Best thing are those things that help on several fronts at once: Grapefruit juice is also antiviral, Oregano oil antibacterial and antifungal, B12 is good for the brain, and fried/broiled/etc. food is not good for digestion anyway, etc. (This is how I figure out what I do and don't take in the end.)
    too many questions? certainly not :)
    best,
    Susanne


    [This Message was Edited on 05/12/2003]
  4. tansy

    tansy New Member

    I too had as many and severe chemical allergies.

    It was impossible to avoid them all but I did cut back on my exposure to as many as possible.

    I was sent to a doctor who specialised in this and he treated me with desensitisation drops.

    I was also on a very comprehensive programme to lessen all the factors that overloaded my immune system; this included-

    tests for food intolerances and avoiding those.
    supps and diet
    treating candida
    probiotics
    fresh air
    daylight
    intravenous vit c
    complex homeopathy to treat other problems, this is different from classic homeopathy which did nothing for me.

    I'm still ill but no where near as chemically sensitive as I used to be. Even my reactions are far less severe.

    Cheers

    Tansy
    [This Message was Edited on 05/12/2003]
    [This Message was Edited on 05/12/2003]
  5. sb439

    sb439 New Member

    thought this might be helpful for some.
    Susanne
  6. pinkquartz

    pinkquartz New Member

    i have thought about how you react to stuff as we have spoken before,and i find it very puzzling........ i have been ill for so long that i have over the years talked to a lot of people, but i can't remember anyone who reacts like you do. which is not meant as an insult, i am intrigued thats all.

    i believe my inability to walk is tied up with toxic chemicals and my liver not de-toxing properly....but i am also hypothyroid and have adrenal problems.

    when you see Dr. H could you ask him if he believes the MCS can stop someone being able to walk.......ok that was a huge cheek of me....and of course do not ask unless you really want to LOL

    Please don't feel offended that i ask , i am not pushy but i can be cheeky.....tell me to p*** off but please do so sensitively.

    Do you think that its mostly the mercury poisoning that causing you react so ?

    Its depressing to hear dk green greens might also be off the permitted list...more than i can cope with at present... though i find Susanne's post very interesting.
    Hope you get on well with doctor H. on thursday , please keep posting on this

    cheers

    pinkquartz
  7. pinkquartz

    pinkquartz New Member

    thanks for your reply...
    its a lot for me to absorb, seems i have only recently seen how beneficial magnesium is for me, so i wouldn't stop that just now.
    i will be thinking over the diet info........i love dk.green greens....
    there are times when it feels as if liking a food is all it takes for it to be forbidden.! chocolate...bread ...and now brocolli LOL

    let me know how you get on . i'm going to give this some thought......
    best wishes..
    pinkquartz
  8. sb439

    sb439 New Member

    I think Dr H is now in his liver and sensitivities phase (after the adrenal phase, before that the viral phase), so he's gonna look at everyones liver ... (just joking)

    Now, the Great Smokies detox test: I don't know what it cost, because it was billed together with other things and I can't even find that. But I think it is in the 100 (pounds) range, roughly. What the gen-test costs, I have no idea, but when I asked Dr Hyams whether it could be 1000 he said, no, clearly less (what a comfort).

    The first test which I had shows how your liver detoxes stuff, and the detoxing goes in two phases, and what happens in case of people with chemical sensitivities (meds are chemicals!) is that the first phase is too fast, i.e. takes too much toxins from the body, the second (which is meant to get rid of the toxins) too slow, so there you are with concentrated poison ... (well, that's roughly what it is.)

    From Dr H I only have the info about the grapefruit juice. As I'm allergic to that (I tried and lost two kilos in two days, just taking 1/4 of a glass, and didn't feel well exactly either), I e-mailed Andrew Cutler, (I have a book by him on Amalgam Illness, very useful also, I learned about the liver phases from there), and he gave me the alternatives.

    Again: I'll keep taking magnesium, and vitamin C, as its good for various other things that are wrong with me, and I'll stick to the broccoli, because in addition I like it (like pinkquartz, I've just thought I found something thoroouhgly healthy I liked eating); the point is to get phase 1 down without getting suicidal (through lack of pleasure in life) ;-) . And as there are alternatives, I think everyone should pick what's easiest for them. I steam, boil or microwave my veg and then put tons of extra virgin olive oil on, to fatten myself up, also have an avocado per day (lots of oil) and ground flaxseeds (=linseeds), and lots of almonds and hazelnuts, organic whatever possible.

    Thanks for the enlightenment on dark green veg, I'm sure you're right, sigh.

    All the best,
    Susanne
    if I forgot something you asked about, please ask again.