Guaifenesin - Can anyone honestly say they are cured?

Discussion in 'Fibromyalgia Main Forum' started by Manwithfibro, Apr 28, 2003.

  1. Manwithfibro

    Manwithfibro New Member

    Has anyone had a remission after long term use of Guai?

    Since FM cycles and we have bad and good days, it seems
    like we could be confusing the cycles with Guai doing something good?

    Thoughts. I would love to hear that someone is cured.
  2. Mikie

    Mikie Moderator

    The Guai treatment is not a cure; there is no cure for FMS yet. The Guai treatment offers the possibility of reversing the symptoms of FMS.

    You are new here and I want to welcome you to the board. You have not been here long enough to read the posts from those of us who have been on the Guai treatment and have benefitted from it. I've been on it almost two years and feel that my FMS symptoms are at least 3/4 reversed. My pain used to require Morphine for relief. I seldom take anything for pain anymore.

    The Guai almost immediately cleared up my Fibro Fog.

    Yes, FMS can wax and wane, but long-term users of the Guai protocol know that they get better over time without relapsing to the level they were before going on the treatment.

    I hate to generalize, but in the two years I have been coming here, I have noticed that men are generally more skeptical and want controlled scientific studies before trying treatments. Men, overall, tend to be more left brained. Women generally are more open to trying things which may benefit them without proof before starting. I know that these generalizations do not cover everyone, but I do see a trend.

    The Guai treatment is pretty benign with very few side effects unless one is allergic to the med. It does take total commitment and patience. It is a long-term treatment and it can make things worse before they get better. I am surprised that more people do not try it. You have almost nothing to lose and everything to gain.

    Love, Mikie
  3. Dorothy45

    Dorothy45 New Member

    Good Morning!
    I am considering the Guai protocol, and I am reading a book co-written by Dr. St. Armand. I am worried that I will find difficulting in trying to eleminate salycitics(sp) from my routine. It all seems so difficult. I spoke with a woman who is incharge of a fm support group, and she says that they can"walk" me through the protocol. I want to do mae myself better, but am afraid I will fail. Is this normal, or am I very pathetic?
    I guess I am not in enough pain yet. I don't know. I am confused over my thought process in regards to fm. Is this going to be a lifetime of dealing with fm, or can it go in to "remission"? Did you have trouble with the protocol at first?
  4. mastersinger

    mastersinger New Member

    Hi! Have been on guai for 3 weeks now I think it is 2oo twicea day. It is agreeing with me,perhaps helping some. Maybe helping me regain strength after over doing it. Thanks for the suggestion. Mastersinger
  5. klutzo

    klutzo New Member

    Here I go again: Read the book! Read the book! Read the book!
    The protocol is just too da*n hard to do without having the book and the salycilate lists available to you all the time.
    The effective dosage is completely individual, and you need to follow the protcol for increasing it properly. Go to the guaidoc website to read more about it, as I do not want to sit here and retype info that is easily available there.
    I know I sound impatient...but so many seem to want an easy way out. FMS is for life, so why not try this? Yes, it's is living with FMS.
    No, I am not cured. I've only been taking Guai for 5 months, and the first two months were spent raising the dose until I reached my effective dose, which was very high at 2,400 mgs. daily. I am in a LOT of pain all the time now, so that's how I know it's working. I've had fibro for 18 yrs. and have not been in this much pain for the past 16 yrs.
  6. Manwithfibro

    Manwithfibro New Member

    That could be the flaw in this protocol. Just because you get worse does not mean you are improving your illness. This is crazy. Yes, I have read the book and YES, I have been on guai. I am not convinced. There is most likely more
    to the story. Be careful on this drug. I do wish you well.
    I don't believe anyone has honestly been cured on this drug.
  7. Mikie

    Mikie Moderator

    NO ONE WILL EVER GET CURED BY THE GUAI TREATMENT--IT IS NOT A CURE!!! No one, including Dr. St. Amand, has ever said it is a cure. If offers the possibility to reverse the symptoms of FMS. There is NO cure for FMS. If you want guarantees, Manwithfibro, you will get none for ANY of the treatments we use. What works for one may not work for another.

    The Guai has very, very few side effects, so all you have to lose is a little money for the Guai, the time it takes to understand the treatment, and the effort to eliminate the sals. This is easier than you think once you get the hang of it.

    I know how easy it is to get discouraged when a treatment which sounds so promising doesn't work for us. I placed great hope on Provigil and it had the opposite effect that I had hoped for. Fear of failure should not stop anyone from trying things, especially when the risk is so low.

    There are too many people who want an instant panacea. The Guai treatment is not for these people. It is for people who are willing to stick it out through the initial flaring.

    Manwithfibro, it is hard to believe you have read and understood the book considering your comments here. I'm not trying to be mean. It took me three times of reading the book to finally "get it." Unfortunately, too many people give the Guai a quick try and if they flare like they are supposed to, give it up because "it made me feel worse." Some give it up because it didn't make them feel better. Either of these scenarios shows lack of understanding of the protocol.

    Dorothy, you have nothing to lose. Read the book and do everything it asks and see if it will help. It helps most people if they stay with it and are patient in finding the correct dose after eliminating the sals.

    Mastersinger, good for you for trying the Guai. It does sound, though, as if you would benefit by reading the book and understanding the dosing.

    Y'all, listen to Klutzo. She knows what she is talking about.

    Love, Mikie

  8. garyandkim

    garyandkim New Member

    for us we felt no better and decided to stop. We have heard that some feel better. With FMS everyone is different, what works for one may or may not help another person. You have to find what works best for you. FMS also mimics many other things and Extensive rule out tests are needed. There are many other illness that can be serious and need to be ruled out. Like Lyme, thyroid, Chari Malformation, etc. To date there is no cure just meds to help the symtoms and exersize, healthy diet, support, and a good sence of hummor. Also, be your own advocte, lots of research and keep a diary and list of all your symtoms and dailies. Also, have copies of all your tests and records.

    Good luck and Welcome, Kim and Gary

    PS Men should have their hormone levels checked to.
  9. Mikie

    Mikie Moderator

    Most of his patients are helped by the Guai, but he has a few who, despite increasing the dose and eliminating the sals, have not benefitted from it.

    I think in that case either those people are missing one of the defective genes most of us have or they have been misdiagnosed. Researchers are leaning toward multiple defective genes and this may explain who some of us react differently to treatments.

    My point is that if people do decide to try the Guai that they get the book, read and understand it, eliminate the sals before starting the treatment, be patient with the dose tweaking, and commit to it. Otherwise, it is a recipe for failure.

    Sadly, even when some people do all the right things, the Guai just doesn't work, but this is no different from any of our other treatments. I am very sorry that after such a long time, the Guai did not benefit you.

    Love, Mikie
  10. TNhayley

    TNhayley New Member

    on the fibromyalgiatreatment web site. I think guai works for part of our problems, but as it has been said, we have a lot of things wrong with us and I don't think just one thing will "cure" us ... not yet at least. But St. Amand's is a theory that, to me, comes closer to the source of our problems than many others. It just makes sense, even if he is a little narrow in his focus. (Personally I think he puts people off because he abhors narcotics - and for those in a great deal of pain, *that* is the last thing they want to hear.)It also makes sense to pursue as many avenues as we need to in order to try and reclaim our health.

    My personal experience is very favorable. I don't think I could accomplish half as much as I do without it. I took a guai break and took so many steps backwards it's not funny. I won't stop looking at other avenues ... like thyroid, or for supplements like NADH and MSM, and I'll keep taking sleep medicine. But, I most definitely won't, however, stop taking guai again. And my kids will take it, too.

    As for cycles, I can FEEL it ... used to be when I would forget to take it I would start to ache. I never forget to take it anymore, but I'm experienced enough to know what a cycle *for me* feels like and on occasion ... smells like. It feels like an FMS cycle for the most part, except it keeps getting easier and easier, less harsh each time. Before my break (where I got cocky) I was to the point where I didn't have cycles at all ... mostly good days all the time, and only on Guai and sleep meds. I'll be back there soon enough ... but I had to prove it to myself, as usual, the hard way. That's how many of us are ... anectdotal evidence isn't really good enough, we have to try ourselves. So, if you tried and failed, OK ... move on to the next thing. If you never try it at all, well, you'll never know.

    Guai hugs,
  11. Right now I think the guaifensin is the best thing we have for this dd right now so I am continuing on it. I have good days and bad, but with the guaif you will eventually notice more good days . I figure what do I have to lose, it is fairly inexpensive and no side effects.
  12. Dayle

    Dayle New Member

    Is giving me back my life. I am so greatful that a friend told me to check it out. I have been on it for 4 months & have found it easy, easy, easy. As for avoiding SALS nothing could be easier just stop using all the cosmetics that you don't need. I only use baby shampoo, lubriderm lotion, & SMACKERS gloss. The only real challenge ,, I think,,, is Toothpaste,, lucky for me I can use Colgate bubble fruit.Also I have not been in any great discomfort; except, for when I first started & that was mostly flu type symptoms which I was having any way.
    [This Message was Edited on 04/28/2003]
  13. Manwithfibro

    Manwithfibro New Member

    IT does cause me to flare up but the good days never really came. I think it does help somewhat but my point is that it is not really a cure or something that will create a remission. I have not met one person in remission on this drug. I have been on it for 8 years. If this is the best I am going to get, this is sad.
  14. Dorothy45

    Dorothy45 New Member

    I really apprecaite the feedback. I needed to know what the guai protocol has done for others (positive or negative). It is overwhelming to find answers/relief for fm. I HAVE the BOOK, but I needed to know others input.Again thank you.
  15. Mikie

    Mikie Moderator

    I'm sorry that there is no one who can offer you a cure. We all want that, but until that happens, for many of us, the Guai is the next best thing.

    I am in remission. I seldom ever take anything for pain anymore. I've gone from Morphine to nothing. This is no cure, but it sure beats lying around in pain and zonked out on Morphine.

    Unfortunately, I also have CFIDS and am still working on that. I am also in remission from the fatigue right now, so basically I'm in total remission. If it weren't for being in remission from the FMS symptoms, I don't think I could stand have that and the CFIDS too.

    I don't know what dose you are on; perhaps you might benefit by increasing your dose. It could be that if it were not for the Guai, you would be having even worse days. It could also be that you are one of the few for whom the Guai simply does not work. I'm sorry your experience has not been what you expected from this treatment.

    For many of us, the Guai has been a God send.

    Love, Mikie
  16. Manwithfibro

    Manwithfibro New Member

    You may be right. I could be far worse if I didn't have it.
    Hard to tell. It is just that when one makes a claim that
    they can cure 90% of patients whether it be Guaifenesin, Magnet pads, Tahiti water, Coral Calcium, etc etc etc, I get
    upset. There is no where in that book that states that
    at best, many patients will remain in pain and not symptom free. Trust me, I was so gung ho on this treatment. I think
    it has maybe solved a part of the problem but something else is going on. I just have yet, except for the one poster, to meet anyone that can claim that it took away their symptoms completely. I think the book makes it seem like that will happen.