Printed The Latest on Guaifenesin Treatment

Discussion in 'Fibromyalgia Main Forum' started by MimiMLR, Dec 29, 2005.

  1. MimiMLR

    MimiMLR New Member

    Guaifenesin was the first thing they ever tried on me and all it did was make me horribly sick!! Well, I recently saw something on TV about a derivative found in Cough Syrup was wiping out all traces of FMS and CFS. And that it would be available to buy over the counter early 2006! According to this article they discovered they had the right thing but through the process of elimination discovered there are quite a few things you cannot take along with it or it cancels out the effects. The testimonials sound promising! But they don't call it a "Cure" because you do have to take it your whole life! But the upside is there are NO side effects and even children can take it. So I'm going to go read what all I have too and am willing to give up to give this a try again. They do admit you get horribly sick at first and even break out in hives because what they say fibro is, is toxic lesions on our tissue (we knew that! lol) but the G is an expectorant and it breaks up the mucus and toxic filled lesions as it purifies your system your a mess! When it's done people claim to have gone back to their full time Jobs after dozens of years on disability. It must be somewhere on this site because I found this board from a link off that page when I was printing it!

    Night All
    Hugs
    Mimi R.
  2. Mikie

    Mikie Moderator

    I answered this under your other post on Guaifenesin. The Guai offers the possibility of reversing the symptoms of FMS and it may help CFIDS, but it doesn't reverse CFIDS symptoms. It is basically a treatment for FMS.

    Go to Guaidoc.com to learn more. The Guai is sold here in several forms. I take the cheaper fast acting form which does not contain the dye which is in Mucinex. Different people do better on different forms. Cough preparations should not be used for this treatment as they contain other ingredients.

    Good luck to you.

    Love, Mikie
  3. Smiffy

    Smiffy Member

    In order for this to work, it is essential for you to follow Dr St Amand's book 'What your doctor may not tell you about fibromyalgia' absolutely to the letter. If you use salicylates (see the book) you will block the action of the Guai, & not reverse your symptoms. It took me a couple of months to understand the book because of brainfog.

    There is an on-line Guai Group that will answer your questions.

    Dr St Amand believes that fibromylagia & CFS/ME are the same illness. The protocol is decribed as 'not for the fainthearted', & is not a quick fix. Your correct dosage is the one that makes your symptoms tolerably worse as the phosphates leave your body cells..

    Good luck!
  4. smiffy79

    smiffy79 New Member

    all though good effects are being experianced with guai you would do better to follow the treatment through with your dr and not some guy in a book.
  5. Smiffy

    Smiffy Member

    You can buy the brands of Guai that Dr St Amand recommends (they don't all work) in the store here; you don't necessarily need a prescription.

    Whether or not you do the protocol with your doctor's supervision (I don't have any choice, as no doctors in the UK offer it), you still need to read the book to understand what you are doing & how to avoid the salicyltes.
  6. finnigan1229

    finnigan1229 New Member

    Just wanted to let you know that there is a very affordable brand of Guai that you can get from Costco. Like $5.00 for 220 400mg tabs. It is the Kirkland brand and rather than being behind the counter like the Mucinex it is out with the rest of the cold meds and you don't have to ask for it. also my Dr. told me that all of the stuff you have to "avoid" on the Guai treatment is BS. You don't take enough in to your system from chewing gum, toothpaste, face cream, etc. to affect it.
  7. Mikie

    Mikie Moderator

    Are not knowledgeable of the Guai treatment. It is critical to have read the book and completely understand the protocol before starting the treatment. If one's doc is knowledgeable, great; if not, it is entirely possible to do this on one's own. Dr. St. Amand isn't just "some guy in a book." He's a physician who has devoted his life to this treatment. His co-author, who is a nurse is always happy to answer questions on the Guaidoc website.

    Cough preparations should not be used. Mucinex contains a dark blue/green dye which gave me a rash. The Guai sold at COSTCO also contains dye but is much, much lighter. I haven't tried it. The fast-acting white Guai sold here works well for me but for some, the long-acting type works better.

    For anyone wanting to do this treatment, there are people here and at the online Guai support group who are happy to answer questions. The first step is reading and understanding the book.

    I did this treatment on my own and am about 90 percent reversed. FMS and CFIDS may be different manifestations of the same illness, but the Guai by itself has not reversed the symptoms of my CFIDS. I am still treating the CFIDS with Klonopin to help me sleep and meds to help me rid my body of chronic infections.

    We are all different and someone else with CFIDS might profit more than I have from the Guai. For my FMS tender points and pain, though, it has been a God send.

    Love, Mikie
    [This Message was Edited on 12/30/2005]
  8. Mikie

    Mikie Moderator

    The Guai almost immediately cleared my fog but it took a lot longer to help with pain. I had been sick a long time when I started it. It is one of the pillars of my healing regimen.

    It has helped with fatigue but because I also have CFIDS and chronic infections, it is taking other treatments and taking longer to address the fatigue issue.

    Love, Mikie
  9. sfriedrichs57

    sfriedrichs57 New Member

    I've just been reading your message about guaifenesin and was wondering how severe the reactions are. I haven't been definitely diagnosed with FM but I do have all of the symptoms. In my small Kansas community, I am told it is probably depression and am prescribed Zoloft. However in reading about symptoms and the trigger points I think FM is the right diagnosis. I currently teach first grade and my family really needs my income, so I don't want to feel so bad that I can't go to work. My body aches are much worse in the fall thru early spring season and I have a chronic postnasal drip (which probably would benefit from the protocol also. I just want to know if this is the time to try it, or should I wait until summer or a short vacation time in case of severe reaction.

    Susan in Kansas
  10. marw

    marw New Member

    Are you saying this is the same as Rubatussin cough sirrup? I am highly allegic to Rubatussin!! I will go blind, and have brain fog that makes fibro looks like a state of health!! THis is a BAD DRUG!! for me, anyway. Appreciate your answer, because some doc or other just gave me a guai prescrip. I think it is an OTC thing...maybe musinex, but I don't want to touch it if it is related to Rubatussin!

    Thanks!!
  11. Smiffy

    Smiffy Member

    You need to find a recommended pure form of Guai, such as the ones used here, to avoid any side effects. Please don't use coigh syrup just because it happens to contain a little Guai - it won't work.

    You can start the Guaifenesin protocol at any time, but need to read the book to find your dosage & to know how to avoid salicylates. Your Guai Group has a list of toiletries, dental products & make up etc. that you can use.

    As Mikie says, Dr St Amand is not just some guy. He is a highly repected physician who has dedicated his life to helping us. He & his nurse both have fibromyalgia, as do their children. He has been saying for years that FMS/CFS is genetic.
  12. smiffy79

    smiffy79 New Member

    i am fully aware that this guy is a dr but my problem with him is i see a man who has jumped on a band wagon and seen a way to make lots of cashola from ppl suffering the effects of fibromyalgia.
    i am in the uk as many of you know and i have suggested guai to my own gp and he was very interested. ive printed off info and some of whats been said here on how its helped.
    id rather do something like this with the backup of my own gp who knows me my case history and my current meds than rely on some guy whos made a lot of money from our suffering.
  13. Mikie

    Mikie Moderator

    Susan, the book tells how to start out on a low dose and work one's way up. We are all different and what dose will cause one to flare may have no effect on another. If you want to start now, I would suggest getting the fast-acting Guai from the Store here and cutting the tablets in half. Take only half a tablet and see what happens. If you do not have a flare in a week, add the other half at night. The overwhelming majority will flare at 600 mgs a day (300 twice a day). Still, if one is sensitive, that may cuase too painful a flare. What I've suggested here is a very low dose and you would likely have to increase it but at least, you would be easing into it. Also, the first flare would likely be less painful. Guai flares need not be debilitating. If they are, the dose can be reduced. The patient controls the rate of reversal by controlling the dose. If you are at all concerned, you can wait until summer break. Even if you take a low dose now which does not cause you to flare, it will at least keep more phosphate debris from being deposited in your soft tissue.

    Marw, Guaifenesin is a common active ingredient in most cough syrups. By itself, it is a very benign substance with almost no side effects. Mucinex brand Guai has a horrible blue/green dye in it which gave me a rash; I do not recommend it especially for those who are sensitive. The fast acting pure white Guai sold here is a good way to start. You can cut off a small piece and try it. It doesn't stay in the system long so that if there were a reaction, it wouldn't last long. Chances are that it is something else in the cough syrup which causes problems. Or...it could be that you are very sensitive to Guai and the amount in the cough syrup is causing the flare. There are a very, very few who are not bothered by sals and are sensitive to even small doses of the Guai. Read my paragraph to Susan about starting out very slowly to avoid severe flares.

    Smiffy79, I'm glad you have a doc who is interested in the Guai treatment. Is he going to take the time to read the book and become very knowledgeable about the protocol? Most docs don't do this. In fact, most who tell their patients about the Guai don't have a clue as to how it works or that they should avoid sals. Most are also unaware that diet can play a big part.

    The ideal situation is to have a knowledgeable doc who helps his or her patients with the treatment and has the patients read and understand the book. This is rare, unfortunately. If one does not have such a doc, one can do this on one's own if one has read the book and followed it strictly. I bought the book for my doc but I basically did it on my own with the help of friends here and Claudia at the Guaidoc website. She is a jewel.

    We had a member here whose daughter had FMS. The Mom studied up on the Guai treatment and started a group up near Zepherhills in FL. Jean hired a medical professional to map the patients and she worked with a doc who was knowledgeable in the protocol. She sat down with new patients and walked them through it from examining their personal-care items to diet, to dose. I attended the Awareness Day festivities at the hospital there and met a lot of the people in the group. The treatment was working for all of them and many had made unbelieveable progress. They told me their stores. Jean's daughter was just about completely reversed and felt really well.

    Again, this is an ideal situation but not all of us have such support available to us. It can be done on one's own if there is no alternative available. I believe a lot of the failures are due to hidden sals and incorrect dose. A good doc and support group goes a long way in avoiding this kind of failure.

    Good luck to you all. The beauty of this treatment is that you are in control and can make the adjustments necessary to tailor it to your needs and body. Jude, who is a member here, is probably the most knowledgeable about the Guai treatment and she is always willing to help.

    Love, Mikie
  14. Smiffy

    Smiffy Member

    Dr St Amand isn't making a penny from me other than the royalties on his book, which cost me £10. Other doctors charge thousands to 'share' their secrets. Claudia Marek, Dr SR Amand's nurse, does not charge for her on-line advice to the Guaigroup.

    People who are interested in doing this would be much better to go to the Guai Group or UK Guai Group message boards for support, where they won't be given misinformation.
  15. smiffy79

    smiffy79 New Member

    why would my gp need to read a book after all its just one guys opinion. how many ppl swore blind that mary whitehouse was fantastic and their dogs were greatly improved by her methods. if any one said that to me now i would slap them .and hard.
    my point being dont believe everything you read.

    of course diet has something to do with it,we could all benefit from cutting the crap and loading on the fruit and veg and of course the guy says to start on a low dose thats commen sence.

    your book cost £10 now put the royalties from that with all the books sold you know of from here and thats a fat wad of cash. i dont think any form of treatment should be undertaken without at least discussing it with your family dr and if dr doodaa doesnt state that in his book then something is amiss,or does he instead advise to by his other book which advises to visit your dr??

    its just my humble opinion i dont think its safe to just chuck something down your throat with out PERSONAL medical advise.

    all the best smiffy xx
  16. Mikie

    Mikie Moderator

    The book is one physician's opinion but it is more than that. The Guai Protocol is explained completely only in the book. There is nowhere else for a doc to get it. It isn't in the medical journals nor is it taught in medical schools. It is not an "official" treatment. It is an off-label use for a med designed for another purpose. Dr. St. Amand did a lot of research, dedicating his life to finding a treatment for FMS. He believes that it is our inability to excrete phosphate debris which causes this material to be stored in our soft tissue. I believe the Guai works in additional ways which are not yet understood.

    I guess I don't understand the anger about Dr. St. Amand and his book. The book contains 1,000 of the most common sals found in products. It is next to impossible to become sal free unless one has this info to refer to. If one does not have the book and one's doc does not have the book, how does one go about doing the protocol? Even if one uses the website, it is still Dr. St. Amand's and Claudia Merek's info.

    There are many very helpful books out there which our members have recommended, all written by docs. If a doc writes a book, he or she is entitled to be paid for it just as a doc has a right to be paid for any services he or she may provide.

    Starting a new protocol which requires knowledge of how to become sal free and how to adjust the dose, not to mention the theory behind the process, is pretty difficult to do if neither one nor one's doc has read the book. Smiffy is right; it would be beneficial to visit the Guaidoc website and join the support group. Unfortunately, the support group message board is not set up like this one and is not easy to use for some of us. I tried and eventually just gave up.

    Again, I wish the best to everyone who tries the Guai treatment because it has been a God send to me. I still believe it is necessary to read the book and understand the protocol. Nothing is sadder than to see someone fail on this treatment unnecessarily after having his or her hopes dashed.

    Love, Mikie
  17. Jude

    Jude New Member

    Four years ago, when this board was much smaller, I read about a possible treatment for the reversal for FM. There were two members who decided to try the protocol (Mikie and Sky). This was before there was a Guai Group Web site. There were few people outside of California who had even heard of the protocol. They had no doctors willing to learn the protocol and certainly no trained mappers. All they had was a book and each other for support. Geographically these two weren't anywhere close to each other.

    I had spent thousands of dollars on traditional medicines, seen some of the best specialists that a good insurance company would pay for. And these physicians were the best in their respective fields. I tried non-traditional modalities of treatment that cost a lot of money. And I got progressively worse to the point of being housebound. So, I decided to just sit back and watch for six months while these two tried yet another approach to regain their health. I truly expected them to fail. I was wrong. They were getting better.

    I had already tried everything else. At this point, what did I have to lose? I would rather try and fail than to always wonder "what if". I got the book. I had no doctor that understood "fibromyalgia" much less the protocol. There were no mappers in my area. I made mistakes at first not wanting to believe the role of salicylates which is genetically predetermined.

    Today Mikie is still here on the board. Sky was younger and last I heard was living the life of a "normal" thirty-something. I do yard work, have a part-time job and actually socialize. I am not on the board everyday because I just don't have time anymore. I also have the advantage of seeing people in real life getting better. Not just words from someone in cyberspace. I participate in a local group that teaches the protocol. We have trained a local person who does the mappings. I also have the pleasure of seeing three generations from the same family getting better. I receive no money for my time. Most people that I see tell their physicians that they are doing the guai protocol. The physicians' attitude is: You go right ahead but don't expect me to learn this protocol.

    I also see (in person) a lot of people who fail. The top three reasons are: 1. Failure to understand the role of salicylates, 2. Not on the correct dosage, 3. Not allowing enough time. Also if you are hypoglycemic and not on the diet you are not going to feel any better. Insulin spikes drive phosphates into the cells at the same time you are trying to get them out.

    Jude (Skepic No More)
  18. Bluebottle

    Bluebottle New Member

    This is an affordable means of trying to reverse our symptoms.No-one is making a fortune from Guaifenesin as no drug company has a monoploy on making it. Many people, having been failed by conventional medicine, have claimed success with it after following it properly. It takes a great deal of personal commitment.
    Why on earth does it make people who don't understand it, & who haven't tried it, angry? To me it offers hope after years of horrible pain & fatigue.
  19. smiffy79

    smiffy79 New Member

    its fantastic that an ingrediant from the make up of an expectorant or maybe just the removal of the crap we bombard our already overloaded bodies with but one way or another its great that its helped some ppl to lead an active busy normal life.

    i could be very vrey wrong about this man and its not anger i hold with him its just a gorgantic (ha ha new word) mistrust.
    i hold this lack of trust because when a dr makes a discovery the norm is to hold medical trials (although costly) then the medicine has to be put through tests by n,i,c,e (cant think what it stands for right now) and oked. thats roughly the run of how things work before a drug can be prescribed with the nhs and somewhere along the line WHO will have an imput.

    where from my point of veiw or the way i see it is that,its great a dr has made it his lifes work to find help for fm patients but to then publish his work in a salable book instead of publishing it as a medical paper i think that smacks.

    if standing on your head and being kissed by a pig helps someone nthen fantastic thats brilliant but spread the word and not for profit.
  20. Bluebottle

    Bluebottle New Member

    I don't know what your problem is Smiffy79, you seem to enjoy making negative comments about something you know nothing about. Lots of people have genuinely been helped by this. It takes a lot of courage & a great deal of support to do. The Guaifenesin sold here supports charity, it does not make anyone rich.
    You stand on your head & kiss a pig if it will stop you hijacking other people's threads in order to be repeatedly offensive. I'll just carry on doing the protocol because I want to get better.
    [This Message was Edited on 01/01/2006]