guaifenesin..tell me your story

Discussion in 'Fibromyalgia Main Forum' started by ksl25, Jan 16, 2007.

  1. ksl25

    ksl25 New Member

    i was really sick in december with a cold/cough/aches/sinus infection. Major lower back pain (it felt like it was lit on fire at times)
    i took mucinex (600 mg guaifenesin) for 2 weeks and went thru 2 bottles of robitussin CF. (100 mg guai) finally when my congestion was gone i noticed about 3 or 4 weeks later, i started with the fibro flare up throughout the rest of my body. I did some online research and remembered about guai. (i thought i was loading up on that stuff and then went cold turkey)

    i spoke to an aquaintance that has had FM for over 10 years and she said guai is the only thing that give her a normal life again.
    well, that gave me lots of hope. i bought mucinex on friday night and have been taking 2 tablets a day(today is tues). (i took advil twice this weekend and used my heating pad a lot too.) of course it will take some time to see if guai is working. but i felt desperate.

    i'm watching what i eat, taking vitamins and omega-3 and trying to do stretching. (i also take 10-20 mg amytriptiline before bed and an occassional xanax..when my anxiety is really spiked) okay, i have to try to sleep now. :)
    i wish everyone a good sleep and non-stiff morning :)
  2. Smiffy

    Smiffy Member

    You need to follow Dr St Amand's book 'What your doctor may not tell you about fibromyalgia' exactly in order to benefit from taking Guaifenesin. It tells you how to find your correct individual dose, & how to avoid things called salicylates in your toiletries & dental products. These use the same kidney receptors as the Guaifenesin, & stop it from being effective. For information go to Dr St Amand's fibromyalgiatreatment website.

    There are several of us here, including me, who are making good progress on the Guaifenesin protocol.There is also information in the library here at Prohealth.

    Take your time to read the book. You will find a list of toiletries you can use on your country's Guai support group website. Good luck!
  3. Smiffy

    Smiffy Member

  4. Mikie

    Mikie Moderator

    You can look up my old posts, along with everyone else's, by doing a search on Guai.

    I now only take a maintenance dose to keep the FMS symptoms under control. Smiffy has given you excellent advice. Check out the book and website. For me, the Guai has been a God send.

    I also have CFIDS, involving several chronic infections so I'm not well--yet. Progress with the CFIDS is slow but I am making progress despite a lot of setbacks the last 9 mos. I don't know what I would have done if I had had to deal with the FMS symptoms too. The Guai isn't a cure but it's the next best thing I've found.

    BTW, the group of us on the Guai here call ourselves "Guai Ladies." If you just put that in your title, we will respond to any questions you may have. Good luck.

    Love, Mikie

    Love, Mikie
  5. bigmh

    bigmh New Member

    I've been on Dr. St. Amand's guai protocol for 10 months now, and I am seeing some improvement....better hours and some better days! I think that Smiffy and Mikie have given you great advice. You must follow the protocol strictly, but the sacrifices are worth it.

    There are many stories of FM's and CFSr's with reversed symptoms...too many to ignore! Best of luck to you...Ann

    PS Another website, www.fibromyalgiatreatment.com, also has a lot of gret info and its own web board.
  6. Kayleen

    Kayleen New Member

    Musinex DM works for me! I too found that out by having a severe cold for over a month. When I went off after the cold was gone the pain came back. I take 1x a day in the morning. I don't worry about the protocol.
    Good Luck!
    Kayleen
  7. ksl25

    ksl25 New Member

    thanks for the info, i ordered the book a few days ago. :)
    I don't use a lot of product, or at least i don't think i do.
    daily uses i think of shampoo/conditioner and toothpaste.
    do you all use the fibro toothpaste or tom's of maine non-mint?
    what would you recommend for dry skin/lips?
  8. Mikie

    Mikie Moderator

    Nanna told me about adding a little honey to a bath and soak in it. I use Epsom Salts a lot and they dry out my skin. Now, I just add some honey and it has really helped. Honey kills bacteria too. There are a number of skin moisturizers which are sal free.

    You can use Vaseline for your lips. It's what the models use.

    Love, Mikie

  9. bigmh

    bigmh New Member

    Hi again...I use the Grace Advantage Citrus toothpaste sold in the store here. I really like it. And I used to use Vaseline for my lips, too, but now am allergic to it! So I use Blistek Silk and Shine. Not all Blisteks are OK, but that one is.

    You will find lots of products that are OK on the fibro website. It is imperative for most of us that we use sal-free products as we don't know if we can tolerate them or not. There is no use in spending the money on taking guai if the sals are going to fill up the spaces meant for the healing guai! You will read about it in the book...and I think will enjoy the book.

    Have a great day, everyone...Love, Ann
  10. Mini4Me

    Mini4Me New Member

    I bought Dr.Amand's book and bought all the "correct" toiletries and tried the protocol for 6 months. I'm sorry to report that it did nothing for me or my chronic pain.
    I'm happy some of you have had success!
    Mini
  11. Smiffy

    Smiffy Member

    I really don't think that 6 months is long enough to see any difference - this is no quick fix. It takes at least three months for every year we've been ill; it's going to take me a minimum of 5 years. However, after 16 months I have more energy & less brain fog.

    I have CFS & fibro & was bedbound for many years. The protocol takes determination, but it's been worth it for me so far - I can do light housework now as long as I pace myself, & I've just done a little house painting without relapsing. I'm still housebound & have a long way to go.

    There is a link to the American Guai support group on the fibromyalgia.com website. The support group has a list of the hair etc. products that you can use. You can also post questions on their message board.

    You can't take herbal remedies, asprin or mint with the protocol.
  12. bigmh

    bigmh New Member

    I agree with Smiffy. I've been on it for 10 months, and although I am seeing some definite signs of improvement, I know that it is going to take years for me to reverse, too.

    Before guai, I was housebound and going downhill in a spiral. With guai, I am not always housebound now, at times have more energy, and seem to recover more quickly from the cycles of reversal. I had tried nearly everything else and was out of options, so I am willing to give guai a try for the long haul. I have nothing to lose. It is the only protocol I have found that works for most people. There are too many success stories to ignore!

    Blessings, Ann
  13. woofmom

    woofmom New Member

    I use it to help get rid of toxins that create and then get trapped in mucous. It does help me.
  14. Mikie

    Mikie Moderator

    Sources of hidden sals. For anyone extremely sensitive to them, the Guai will fail unless they are removed. I heard about a woman who was sal free except that she walked barefoot on her lawn. That was enough to block the Guai. It can takes months and several searches to find hidden sals and get the dose just right. Still, the Guai Protocol doesn't seem to work for everyone. There is a small minority for whom it doesn't work. I do think it's worth giving it plenty of time. The Guai does help in other ways and one basically has nothing to lose by trying it.

    If one has professional help, the chances of success go way up. There is a group here in FL which utilizes a doc knowledgeable in the treatment, a medical professional who does the mapping, and a woman who works with the group to keep them motivated and help them weed out the sals. Their success has been phenomenal. I saw it for myself at their Awareness Day Event one year.

    If no such help is available, it is possible to do on one's own. I did. I'm not as sensitive to sals and can tolerate a little exposure to them before I will block. I do stay sal free most of the time. In the beginning, it is essential to be completely sal free in order to find out just how the Guai is going to affect one.

    Love, Mikie
  15. zenouchy

    zenouchy Member

    It's not a cure (nor is any Protocal) and I have pain sometimes, but I went from a 10+ on the pain scale to pain free some days (!!). I'm usually at a 0 to 2 on the pain scale. Once in awhile I flare, some days I feel more pain than a 2, but I rarely feel the horrid pain that was once a norm when I was first dxed with fibro. Exercise helps me a lot because it keeps the joints lubricated. That and the guai are most helpful.

    Staying in bed and pain meds help the least, but I must rest a lot to help with fatigue. However, if I've rested a lot, I have to get up and move to get help with the pain. The Guai is a Protocal that takes a lot of getting used to. You have to determine if you're sensitive to sals. If you are, then it's going to take time to get rid of the 1000s of sals out there. That takes a lot of commitment, but so does any Protocal. I'm not sal sensitive, so it's been easier for me.

    Also, the longer you've had fibro, the longer it takes for the Protocal to be successful. I started the Protocal very early in my dx, although I probably had fibro before I got dxed. PLUS, it's NOT A CURE. Meaning, there's much ambiguity in determining if this Protocal will be successful. *You must note the time frames for how long it will take to be successful at this Protocal with how long you've had fibro. If you've had fibro for ten years, like your friend, it will take much longer to be on the Protocal....I can't remember, but if you go to fibromyalgiatreatment.com (where it discusses the Guai Protocal), it will tell you. Plus, everyone reverses differently, so it's still a guideline.

    At some point, like any Protocal, you have to determine if it's helping you. I was able to see that the Guai helped me. Not everyone will be successful at every Protocal, but it has a high success rate. You need to read the dosaging instructions before starting. It's critical. The dosaging is very unique to each individual!

    Please go to fibromyalgiatreatment.com for more info because just taking some mucinex isn't necessarily going to help without knowing how to start. You will feel worse before you feel better! They have Guai support groups you can join at that website because there are many specifics to the Protocal, and they are happy to help newbies. At the very least, you will want to get the book about the Protocal called What Your Doctor May Not Tell You About Fibromyalgia by by R. Paul St. Amand, M.D. and Claudia Craig Marek which will give you more details about the Guai Prot. and how to start. Good luck!

    Much love,

    Erika


  16. ksl25

    ksl25 New Member

    thanks everyone for your advice and kind words. the book didn't arrive yet, but i'm hanging in there.