Re: GUAI users- esp. for Seaview & Oregoncoyote

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Jan 18, 2003.

  1. klutzo

    klutzo New Member

    I just returned from yet another $70 trip to the store, this time to replace supplements I can no longer use. The guaidoc lists do help, but I did notice a couple of things which were on both the NO-NO list and the OK list!!! Does anybody here know if Guar gum is OK or not? It's on both lists.
    I would like to ask you all, esp. those who got no results, and those who got great results, to take time to answer the following:
    1. Did you follow the protocol 100% at all times?
    2. How long did it take it before you got results or gave up?
    3. If you got results, what were they? If you could not work, can you work now? Do you still have to take meds, and if so, what?
    4. What dose of Guai were you taking, and did you make sure you had a flare before settling on that dose?
    5. What is your dx.....FMS or CFS or both?

    I want to be super careful so I don't waste all this money I'm spending. I know Mikie can get away with some sals..... For example, she told me she doesn't worry about shampoo since it is washed off right away. However, I know from previously changing from commerical to health shampoo that has no SLS or ALS (bad chemicals which can cause hair loss, but are in all regular shampoos because they make the suds) that it takes 3 whole wks. of washing your hair, 4 times a week, to get rid of all the sudsing agents that stay in your hair after washing, and I rinse it well for at least 3 minutes! So, she has a high tolerance for Sals. I don't want to take that chance.
    I am already having to start all over tomorrow after finding " acacia and annato ext." in the small print on my bottle of COQ10. Confusingly, acacia is on the NO-NO list, but acacia gum is on the OK list. It never occured to me that a bottle of COQ10 had anything in it except COQ10. Now I have finally gone through ALL of the things I use, and bought new vitamin E, new COQ10, and new Potassium supps. I'll just have to give up my fiber supplement, since I can't find Pysllium seed husk on either list; same for soybean oil, rice powder, annato ext., apple pectin, acetyl palmitate, and all of the digestive enzymes except lactose. I am taking Pancreatin for digestion now, since it comes from pigs. I wrote to Claudia about the others, but I know she must be getting sick of me. She told me to join the guai support grp., but it won't let me in. It keeps giving me an error message.
    I appreciate the time you take to answer me more than I can ever say!
    Hugs,
    Klutzo
  2. selma

    selma New Member

    Just bumping for those that do.
    Love and huggs, Selma
  3. klutzo

    klutzo New Member

    I appreciate the bump. I'm bumping again, since this Board is moving so fast that my post will disappear before any guai users see it. That's what I get for posting on a weekend. Guess I'll just keep bumping. :)
  4. Fibromiester

    Fibromiester New Member

    I will reply so your post goes to the top of the board! I don't have a whole lot of Info, I'm not a Guai-nut. I don't follow protocol 100% at all times. And I can honestly say, even tho I've been on guai for a few years, I can't tell any difference, one way or the other...but if it's working-I think-I don't want to get off! I have FMS/MFP & CFS and the pain is so bad at times, I think that none of my meds work...SO DITCH 'EM!!!! No, I need my meds, I can tell when I've missed them! So, I take my Guai..........Fibromiester
  5. klutzo

    klutzo New Member

    I can't imagine wasting all that money on something that is not making any difference though, not to mention putting an unnecessary drug into your body! Why keep taking it if you are not any better? I will give it 100% of my attention for several months, if that's how long it takes, but if nothing is happening then, I'm out of there.
    In the book, it says one week at 600 mgs. daily, then 3 weeks at 1,200 mgs. daily (where I am now), then 3-4 weeks at 1,800 mgs. daily, then the same at 2,400 mgs. and if you still get no flare, then check for Sals again. To go to a higher dose than that you do need a doctor involved, since it would be an overdose. My doctor refuses to even discuss Guai anymore since Dr. Bennett's study came out negative. If I get nothing at 2,400 I will quit and wait for others to prove or disprove this theory.
    Klutzo
  6. klutzo

    klutzo New Member

    Where are you guys??? K
  7. Mikie

    Mikie Moderator

    I could not get the Guaigroup to work for me without having it sending me e-mails all day long. It's one of the worst set up sites I have ever seen. I just got sick and tired of it and gave up, although a nice lady named Gwen did try to help me.

    I know that the psyllium husks in food go straight through the system and are ok. Claudia told me that when I had to start using a stool softener with the high protein diet. The only downside is that it causes constipation.

    Yes, I have determined through trial and error that I can tolerate some sals and I try to keep away from them as much as possible. What I find deadly are concentrated extracts like those found in supplements. I hated giving up the ZMA. Again, I admire your trying to eliminate all the sals. I do know that some shampoo does stick to the hair, but Dr. St. A says it's usually not enough to cause problems; however, it would in a sal-sensitive person. Good luck.

    Love, Mikie