More Guifenesin Questions

Discussion in 'Fibromyalgia Main Forum' started by Dragon_Fire, Apr 25, 2003.

  1. Dragon_Fire

    Dragon_Fire New Member

    Hi All,

    I was just diagnosed at the beginning of March with FM. I have been reading about the Guifenesin treatment and have a few questions that can't be answered by a book (well, maybe it can but I haven't read that book yet).

    My question is this...can someone who has been (or is on) the Guaifenesin treatment give me some insight? From all I have been reading, you are trying to get worse to get better...why does this just sound wrong? Also, I am getting a copy of the Dr. St. Armand book tomorrow but I wanted to know if antone can tell me if it has helped them.

    Thanks.
  2. Suzanne1961

    Suzanne1961 New Member

    I have this book on the Guaifensen therapy ! I have ask all of the rheumatologist, medical doctors and my neurologist about this treatment, and not a one have heard of this. My doctors are at a big hosptial in Atlanta, Ga, @ Piedmont hosptial, so I wonder if it was a good or well know treatment that really can help, why wouldn't they know about it ? Would you let me know what you find out ? I know that neurontin a seizure medicine controls my paim real well except when I have a bad flare which I am now having again :(

    Sincerely,
    Suzanne <3
  3. Shirl

    Shirl New Member

    Dragon_Fire and Suzanne, glad to have you on the board.

    I do not do the Guaifenesin treatment, but many of the others here do and have had good results with it.

    The Book; What Yoour Doctor May Not Tell You About Fibromyalgia' by R. Paul St. Amand, MD. is a must if you want to try this treatment.

    You can also go to the 'HOme' page here and read some articles by Dr. St. Amand on Guaifenesin.

    Others will be here to share their experience with you soon.

    Again, welcome to both of you.

    Shalom, Shirl

  4. Dayle

    Dayle New Member

    I have been on Guai for 4 months & am doing very well. I don't like the way the book & everyone uses the word cycling but there isn't to many words to discribe what happens. Basicly, the guai purges phosphates from the body via the kidneys. In a healthy person this happens every day of their life; not so,with the fm person. So they store the phosphate in the cells of the body (CAUSES ALL OUR PAIN). Once the phosphate starts to leave the cells it can cause even more pain especially if the kidneys can't get rid of it as fast as it comes out of the cells. So, this is why you only need to feel SLIGHTLY WORSE. We didn't get sick over night & it takes a while to get rid of the phosphates.
    I have had it pretty easy & am so greatful to Dr. St.Amand & GUAI. When I have a bad day or a bad few hours I think to my self MY BODY IS PURGING OUT THE BAD!!!!
    I hadn't been swimming much over the winter, but today I went & I was able to do in 30 min what it took me an hour to do last fall. Do give it a try.
    Good Luck,,,,D.
  5. Tibbiecow

    Tibbiecow New Member

    Nobody wants fibro but at least a diagnosis and treatment is much better than not knowing what in the heck is wrong with you.
    First, Dayle, SUPER job of explaining the guai process in a nutshell.
    To Suzanne, I tried to get a really compassionate rheumy who totally believed in fibro and was treating me for sleep, pain, etc. to put me on the guai protocol and he refused, having found a flawed study, the "Oregon Study" on the internet, in which patients did not know that they had to avoid all salicylates such as aloe and mint toothpastes, and thus guai in this study obviously had no effect. He was afraid his colleages would find out he was treating me with guai. Doctors operating as part of some "establishment" will behave like mice, protecting their big egos and taking no risks. My new rheumy has had me on guai for 15 months, and has mapped me and I am about 90% cleared. I just about had to trick him into seeing me, he doesn't take new fibro patients since his practice is so full. But I told him, at his receptionist's desk, where he goes between seeing all patients (he is the ONLY doctor in his practice) in an ambush and a shameless attempt to get an appointment, "Dr. Sandoval won't treat me with Guaifenesin." He basically interviewed me right there, talking about how doctors were afraid to find out about it or ask about it. He asked me about how I was doing, because I was taking guai on my own, and then gave me a prescription for guai and then a follow up appointment!
    My neurologist has an open mind about the guai, I believe for two reasons. One, he has been working with my rheumy for several years, since before he started using guai. Several of my neurologist's patients also see my rheumy and are having good results with the guai. Two, he is in a private practice. The more you get these guys running around trying to make sure they are treating their patients exactly like the other doctors in the practice, the worse the treatment gets.

    To sum it up, Dragon Fire, I have had a tougher go of "reversal" then Dayle has. But I would never, ever give up the guai. Nor my rheumy, whose views, you will come to understand, differ slightly from Dr. St. Amand's.(By the way, my rheumy has fibro and is on guai himself.) I am grateful that he has medicated me to provide relief from the fibro symptoms. I have been able to deal with the pain with the help of Ultram. I have slept better with Klonopin. And recently I have added Neurontin, which really kicked the sleep up a notch and helped a bunch with pain. I have what my neurologist calls "Intractable migraines." I call them a pain in the a$$. Recently I have begun to think that perhaps I "cycle" migraines, meaning that when I am completely cleared they will go away. Wouldn't that be nice. But I am in an entirely different place than I was two years ago, in such pain and so fatigued that I was just soooo depressed that I didn't care anymore. I have a life now. I still have flares, migraines, bumps in the road, and always will, that's fibro. But as I said before, I know I would be bedridden by now if not for guai.
    Have fun with the book!
    Tibbie
  6. Mikie

    Mikie Moderator

    Yes, basically you try a beginning dose of the Guai and if it makes you flare, that's your dose. If not, you increase until it makes you flare. The flare happens because the Guai pulls phosphate debris out of your soft tissue much faster than the illness caused your body to deposit it there. The debris is in crystal form and when it's pulled out, it's like hauling little barbs through the tissue. The flare should not last too long or be worse than an ordinary flare; if it is, you can decrease the dose and build back up to it. It takes patience to tweak the dose. Most start at 300 mgs. twice a day.

    Reading the book is absolutely essential as is understanding the theory, the protocol, and the necessity of eliminating sals from your regimen (it's in the book).

    I've been on the Guai almost two years and am about 3/4 reversed. I usually take nothing for pain, but I used to have to take Morphine. The first benefit I noticed was a lifting of the Fibro Fog.

    Love, Mikie
  7. klutzo

    klutzo New Member

    I am curious...your doc sounds very informed. How does his theory differ from Dr. St. Amand's?
    I am having Guai flares almost constantly, so maybe I upped the dose too far, but I am willing to stick this out, since my reversal would be SO long otherwise (been sick almost 18 yrs.).
    Thanks,
    KLutzo
  8. Tibbiecow

    Tibbiecow New Member

    My Doc IS well informed. I would say his opinion, rather than his theory differs from Dr. St. Amand's. He has fibro himself, and has been treating patients for a long time without guai, and he treats his patients for sleep and pain as well as with guai. Mind you, he wants his patients on as low a dose of pain meds as possible and when the guai gets its job done, the pain meds go away. I have been a hard case, I don't cycle at a dose any lower than I am at and sometimes (rarely now) I can be in real pain that my Ultram doesn't cover. The other problem is my migraines, I have had them so frequently that I am building a tolerance to the narcotics.
    From what I read in the book, Dr. St. Amand wants his patients exclusively on guai. If they come to him from another doctor, he's not going to take meds away from them. But if they see only Dr. St. Amand, my understanding is they will get a script for guai. Period.
    I think my doctor is the greatest, most compassionate doctor that I have ever had. When I went in for my first appointment, I was so afraid that they were going to decide that he couldn't see me after all because my neurologist never actually made the necessary referring telephone call, you see my rheumy doesn't take new fibro patients except under extreme circumstances. Anyway I was so nervous my blood pressure was REALLY high. But that office is a jewel, all of the nurses are so well informed and also compassionate that they could run the practice without the Dr.! But yes, my Dr. HAS fibro and so does his wife, he keeps up on the latest treatments and provides the best palliative care that he can and is SO glad to have GUAIFENESIN because now his fibro patients are getting BETTER!!!
  9. I have been on the guaifensin for about 2 yrs for recurring sinus infections. Coincidentally I found here on this board that it helped fibro and then started taking it on a reg basis . Before I would forget half the time to take it. I never mentioned to my dr. that it helped fibro. Last year my Dr. told me one of her patients said it helped fibro. (lol) I said oh really ,I had heard that too. LOL! Here I was afraid she wouldn't give it to me . But it is such a basically no side effects med that most drs will give it to you. I wouldn't dare stop taking it, as I am afraid to find out how bad I would feel then. I think we educate our drs. more than they us!
  10. klutzo

    klutzo New Member

    I do remember that in the book, now that you mention it!
    I agree with your doctor. If I had not been given Xanax, I would have killed myself, and suicide is against my beliefs. I would have done it anyway. I could not even walk without Xanax, let alone sleep. I once went 4 nights without ANY sleep before I was dx'd and became delirious with my vision fading in and out, but still could not fall asleep. Thank God for drugs when we really need them. Gotta have some compassion until the Guai starts working!
    You are SO lucky to have such a great doc.
    Klutzo
  11. Tibbiecow

    Tibbiecow New Member

    You can bet I'm just as happy to have him for a doc.
    I'm relieved that he's taking on a PA. His practice is just too busy for the amount of patients he has, it's hard to get a question answered. Unless its a real emergency, just urgent and needs attention from the nurses, I have to show up on their doorstep and wait until they have a free minute to answer my question. Otherwise it goes on the nurse's desk and goes unanswered, and the practice is closed fri thru Sun.
    Anyway, my last appointment I had a nice compliment, Dr. was taking his PA around with him seeing patients. we talked about guai and such after exam and everything. Dr. said I was his most knowledgeable patient about myself! I hope to keep on learning.
    Klutzo, I am sure glad you had that Xanax.
    Love,
    Tibbie
  12. Tibbiecow

    Tibbiecow New Member

    Are you Salicylate Free? And have you read the book? I don't mean to rain on your parade, but there really are soooo many ways for this not to work that I feel it is my duty to mention this to you.
    Hugs,
    Tibbie
  13. TNhayley

    TNhayley New Member

    I find it interesting to see mention of a doc that actually has fibro uses guai. I have just recently found a doctor in my area who has fibro ... and who also uses guai. He conducts a *support group* once a month on his own time in which he answers guestions and gives out information, which I think is pretty awesome, too.

    He does seem to differ with St. Amand in that he thinks that guai is only part of the answer. Getting sleep is a top priority and Stage 3 and 4 sleep are crucial. Other things he looks at are thyroid and hypoglycemia and believes in doing what is needed for each person, if pain meds are needed, so be it.

    A couple things he talked about at the last meeting were Pregabalin and Neurontin, MSM, DHEA - converts to estrogen, testosterone and GABA (need a doctor to follow you on this), and he was excited about NADH which he said enhances oxygen driven metabolism, and he mentioned the importance of B vitamins as critical for nervous system function. He also seemed impressed with the "Eat Right For Your Type" diet.

    Anyway, I think guai is a definite part of our treatment and I wouldn't let Dr. St. Amand's more narrow focus scare you away from trying guai. For some people it is true that they get to a point of not needing much else. But, again, we all are so different. I personally take Guai (2+ years and wouldn't go without it), Neurontin, Temazepam, Zanaflex, Armour, MSM, Flax Oil, Vit C and also a multi-vitamin, and Magnesioum/Zinc/Calcium, and I'll start the NADH as soon as I can find a deal on it.

    One last thing, I believe that the younger you are the quicker you see results. It only makes sense as a younger body hasn't had as much time to build up the phosphates to begin with, so there is less to purge. There's talk of using guai as a preventative in children of FMSers, and that falls right in line with my theory. NOT that guai doesn't work for fibro old-timers, it just might take a little longer for them to see the benefits. No matter what stage you are in the DD, I think it's worth a solid try. You can't really do it half-a$$ed, you have to commit to avoiding sals and you have to have patience. It's sure a good payoff when you start to see results.

    (((guai hugs)))
    Hayley
  14. Mikie

    Mikie Moderator

    I think you have a good point about the Guai being more effective in younger souls. I am an old broad, 58, and have been sick 12 years. My Fibro Fog lifted almost immediately upon starting the 600 mgs. a day of the Guai. I did flare at that dose, like the majority of people do. Over time, I have gradually increased my dose, flaring each time, in order to speed things up. I have found that by taking a larger dose in the morning than in the evening, it has the same effect as increasing the dose (I just got tired of cutting the tablets when I was on 1800 mgs. a day). Since we urinate more during the day than at night, this seemed to make sense. Now that I am on 2400 mgs., I just take two tablets morning and night.

    My feeling about the Guai is, "Why wouldn't someone try it?" It's relatively harmless and offers the promise of reversing the symptoms of FMS. I have both FMS and CFIDS, so I'm not home free, but to have my pain and fog relieved frees me up to pursue treatments for the CFIDS.

    Someone mentioned that the docs don't seem to know about the Guai. It's true, most do not. This is one of those things we need to do ourselves, including managing the dose. This treatment requires tremendous commitment. I gave my doc the book and bought another for myself. I think it is up to us to educate the docs out there so they can more effectively treat their other patients.

    Love, Mikie