this guai stuff is so confusing

Discussion in 'Fibromyalgia Main Forum' started by PaulMark, Oct 3, 2002.

  1. PaulMark

    PaulMark New Member

    do i understand guai is mostly for fms my primary dx is cfids by dr. cheney i asked him on 6l7 about the guafisten????? he said they used to use it but the problem is that sylicates are in just about everything and some of you have posted it hasn't helped, the way i understand it wouldn't help the immune abberations i have anyways with cfids i've dev. the fms later in my illness,

    any imput on this?? Pm in KY
  2. PaulMark

    PaulMark New Member

    do i understand guai is mostly for fms my primary dx is cfids by dr. cheney i asked him on 6l7 about the guafisten????? he said they used to use it but the problem is that sylicates are in just about everything and some of you have posted it hasn't helped, the way i understand it wouldn't help the immune abberations i have anyways with cfids i've dev. the fms later in my illness,

    any imput on this?? Pm in KY
  3. Mikie

    Mikie Moderator

    I also have both FMS and CFS and have been on the Guai about 1 1/2 years. It has made a HUGE difference in my pain and fog. There are a number of people who have gotten good results. The problem is that if a person has CFS, the Guai will not reverse all symptoms. It used to produce some pretty lengthy remissions, but this last year has been so stressful for me, that I have not had remissions past one day. When I am in remission, it is almost as though I've never been ill.

    Your doc doesn't understand that the salicylates in food is of no concern to us because it is easily handled through the digestive tract. In fact, if you take calcium with meals, it helps eliminate phosphate debris through the intestines whether or not you are on the Guai. It is only when botanicals/herbs have been extracted and concentrated into supplements that the sals overwhelm the system and render the Gaui ineffective. Pain meds with sals (aspirin) cannot be used. One must not use makeup or lotions with herbal contents as the sals will be absorbed through the skin. Shampoos and soaps which are rinsed off are not of as much consequence. Our sensitivity to the sals varies from person to person.

    This is not a treatment for the faint of heart; it's a long-term strategy. The rule of thumb is that it takes 2-3 months to reverse for every year one has had the FMS. If that is true, I am anywhere from 3/4 to 1/2 in reversal. I believe it is closer to 3/4 because I have been regularly increasing my dose to speed up reversal. My tender points are nowhere nearly as tender and I no longer need meds for pain very often. I believe the fact that the Klonopin helps me get good quality sleep also helps with the pain. In addition, I do flexes and stretches as physical therapy.

    I believe most failures are from people not understanding the theory and protocol, not taking the appropriate dose, and not eliminating the sals. Getting the dose correct takes a little trial and error. And when you do get the dose right, it produces an initial flare when the Guai starts pulling the phosphate crystals out of the tender tissue.

    I am very happy I tried this treatment. It is a tried and true drug which is cheap and has very few side effects. It is the only treatment which offers the possibility of reversing FMS. Even though I still have CFS, eliminating FMS symptoms is half the battle won. Look up Dr. Paul St. Amand's website or do a search on Gauifenesin. It is absolutely necessary to read his book, "What You Doctor May Not Tell You About FIBROMYALGIA," if you decide to do the treatment. My feeling was, "Hey, what have I got to lose?" Well, I lost nothing and gained a whole lot.

    Love, Mikie
  4. ohmyaching

    ohmyaching New Member

    I wrote for information about the guai from Dr. St. Armand and the impression I got was that you could never stop taking it. I tried taking robutussin (not recommended) just to see if I felt better from guaifenesin and indeed I did, but I wonder if there really is a reversal of your disease if you can't ever stop taking it.
  5. Mikie

    Mikie Moderator

    Because when a person has FMS, s/he cannot eliminate the phosphate debris from the Krebs energy cycle, the Guai must be taken for life or until there is a cure. Otherwise, this debris will just start accumulating again in the soft tissues and, eventually, in the joints.

    Guai is very cheap and has few, if any, side effects, so long-term use should not be a problem. Robitussin is not the way to get this medication, even though it is the active ingredient in cough syrups. Your doc can prescribe it in long-acting tablets, but you must alse ensure you eliminate the sals from your regimen.

    Love, Mikie
  6. PaulMark

    PaulMark New Member

    mikie: i use tom's natural spearmint flossing ribbon, and their peppermint tootspaste, cause cure for all illnesses book (hulda clark) controversial to say least, says regular floss and tootpaste is full of pollutants etc.

    i also use a passion flower, valerain, skkullcap lemon balm someitmes at bedtime, so i don't have to take as much doxipin elixcir under the tongue with klon. and neurtonin to sleep,

    as i've said Cheney is my dr. surely he's knowlable about GUAI he keeps up with many many therapies during his l5 yrs.

    i'm talking with a naturpath nutritionist over phone and mostly e maiils and he's l of those hates meds. so he's telling me to reduce drugs, i don't take much anyways, 500 mg. total neurontin, .lmg klon. HS 2-3 small drops dox.

    G. hormone not successfull had to drop mestinon which had benefits due to gastro side effects,

    so no wonder i'm confused,

    so i guess point is no mints right? so do you risk polluted floss and toothpaste?? toms does make a non mint fennel, also can't gaui have side effects????

    does it help TH2 overactivation, immulogic disturbances???? PM
  7. Mikie

    Mikie Moderator

    The only toothpastes which we have found we can use are the children's toothpastes like Barbie, Blue's Clues, Barney, etc. They are sweet fruity or bubble gum flavored. Mint in any form is one of the worst problems for Guai users. That means no mouthwash too. You can chew cinnamon gum and I have found an Arm & Hammer brand which whitens teeth. I do a good job of brushing and use plastic brush picks which are like toothpicks with tiny brushes on the end to get all the debris out from between my teeth. I also use warm water in my Water Pik and a rubber gum stimulator.

    I think Hulda Clark's ideas on dental care are a little far out. If I listened to her, I wouldn't have any teeth at all. It is true that bacteria in the gums can lead to a whole host of health problems, so taking care of ones mouth is vital. That is another reason I love my zapper. One quarter of all people over the age of 35 have gum disease. Our illnesses plus many of our meds which give us dry mouth put us at extra risk.

    The Guai reverses the depositing of phosphate debris in the muscles. This allows the mitrochondria in the body and brain to function better. Eventually, when the brain and body are working like they are supposed to, remission begins. Like all treatments, different people have different levels of success. In order to do this treatment, you do have to make changes in what you put into and on your body.

    For people like me with CFS on top of FMS, I don't believe the Guai will be the complete answer, especially since I have chronic mycoplasma infection. I expect to get well one of these days, but it won't happen til the mycoplasmas are under control. Both the Guai and the antibiotic therapies are long-term undertakings and results are slow.

    Love, Mikie
  8. G

    G New Member

    I, too have been taking Guai for 3 1/2 years now and have had to increase my dosage a little from time to time. It has helped me also with my painful tender points and muscle spasms as well. Although, I am not pain free I still believe that Guai has given me back my life quality in so many ways! I will take it till the day I die or the day we have an cure, I'll not stop Guai for ithas helped me sooooo much.

    Pm don't give up looking into it and I'd say Mikie knows so much about it, that he be there for any questions you may have. He explains it very well and clearly too!

    G

  9. Mikie

    Mikie Moderator

    I don't think we have spoken here, so welcome to the board, even if it is a little late. I'm sorry I can no longer greet each new member as he or she signs on.

    I'm glad the Guai is helping you. Do you mind if I ask what dose you are on. I currently take 1800 mgs a day, 1200 in the morning and 600 at night. I used to take 900 twice a day, but I figured that the kidneys don't work as much at night, so it might work faster to take the larger dose during the day. I must have been right as it did bring on a Guai flare when I started this new regimen.

    Have you figured your supposed reversal date? Mine should be sometime around next Jul., but, as I mentioned, I have other factors, so it's hard to tell.

    Love, Mikie
  10. PaulMark

    PaulMark New Member

    mikie: so i couldn't use the passtion flower skkullcap, valerian lemon plant liq. extract my plant herbalist prepares to help me cut back on a doxipin elixicer drops HS that dries me out???

    guai is a drug what side effects does it have?

    thank you PM
  11. Mikie

    Mikie Moderator

    You are right; you cannot use herbal/botanical extracts while on the Guai.

    Guaifenesin does have some slight blood thinning properties, which for most of us, is a good thing. I have heard people say that it can upset the stomach, so it probably should be taken with food. Other than that, it is one of the most benign medications on the market. It is extremely safe and cheap. A bonus for anyone suffering from sinus and brochial problems is that is loosens mucus in the body.

    It is impossible to understand the Guai treatment without reading the book. I had to read it three times in some areas before "getting it." Now, it's second nature to me.

    Love, Mikie
  12. G

    G New Member

    I was diagnosed 18 years ago but know that I must have had it for several years, but based only on my 1st diagnosed dated, my reversal date should be 4 1/2 years. Which would be an year from now but I believe it will be longer for me for I had symptoms before '84.

    I take approx. 1800 mg in morning and same at night - 3600 mg every day. I get mine in Canada and we fill the capsules ourselves - each one is approximately the same all the time. I get 100% guai with no fillers and is powder form and fine that there is very little that blocks me but if it happens, I take an shower and my cycling will begin again.

    In the beginning I had to do it all by myself with no support and took what I had found on the guai site and printed out all info including the faq's. I was mapped and the first 3 days I had taken 300 mg in am and pm and found I wasn't cycling yet, and these were packed full. So I decided I should start taking 2 of the 300 mg capsule at am and pm. I started cycling and need I say that it was so painful but I wasn't stopping, oh no I wouldn't give up. A few weeks later I was talking to - who has become my dearest friend - the company I was getting it through and asked how much an fully packed 300 mg capsule would be in actual mg and she told me at approx 600 mg. So in the beginning I hit my bed full force taking approx. 2400 mg each day. It really was funny and I still think it funny. Since I was bedridden and having 24-7 muscle spasms and painful, I had nothing to loose at the time by continuing the dosage. It's working and for me that's a good thing! I am now not bedridden, can do some light cleaning, light dusting and even cooking some of the meals again! I can go sit on my patio and relax. I can go shopping when spring comes till the snow falls - which makes it hard to go out walking & rolling with my wonderful hubby. One day my dream it to be able to walk through the nature trail and the park, walking till we get to the double US & Canada Bluewater Bridge, where it's so beautiful to sit and watch the boats go up & down the river, looking over at Port Huron's beautiful scenery! It's beautiful in the summer and this year I finally got down to the bridge and just loved it.

    That Guai is certainly worth every painful cycling to get to where I am today!

    Love, G

  13. PaulMark

    PaulMark New Member

    Would you mikie and G be willing to e mail me and tell me about expense , ins. coverage (probably not likely), best place to get it and about cycling, problme is i'm too ill to read books very long at all, and the cognitive problems iwth my primary dx of cfids si bad so have trouble processing as many of you do,

    will you help me, i' d like to explore and check with my dr. on this possibility treatment

    thank youu paul
    paulstory@iolky.com
  14. G

    G New Member

    You bet and I'll email you what info I can get my hands on.
    Either save it to your notepad or to your document email folder. If you have an printer, print it out and read when you are able to, if you find yourself feeling overwhelmed by info, put it down and take time away from it till you feel up to reading it again. Maybe if an family member or friend can read it to you, which would help very much. If you had an recorder, maybe they would let you tape while they read it to you. That way you can listen to it till you understand it.

    I'll email you info today or tonight, okay.

    G

  15. Mikie

    Mikie Moderator

    The Guai is not at all expensive and insurance should cover it if prescription coverage is included. My best advice is to buy the book, "What Your Doctor May Not Tell You About Fibromyalgia," by Dr. Paul St. Amand. You can actually read parts of it on his website which you can find by doing a search on the web on his name or the word, guaifenesin.

    I was in a horrible fog when I read the book and I had to read parts of it three times before I "got it." The first thing that cleared up almost immediately was my Fibro Fog after starting the treatment. Then, I read the book again! The advantage to buying the book is that you always have it there so you can read what you forget or are confused about. Another advantage is that you can show it to your doc when you are ready to ask for the Rx. I bought a copy and gave it to my doc. Since you need to eliminate the sals from your regimen, you need the book to refer to in order to ensure you are not using products which contain sals. There is a list of 1,000 of the most common botanicals which are a no-no on the treatment.

    Paul, I will be happy to answer any questions you may have after you start reading the book. I know it is confusing and it takes some time to understand it, but I don't feel that I would be of any use to you until you get the book. I had the book three months before I even asked my doc for the Rx. In any case, the book is very good whether or not you ever decide to do the treatment. BTW, don't worry about trying to understand the Krebs Cycle which he explains. It isn't necessary to understand it in order to start the treatment. Suffice it to say that the Guai will help get the debris out of your energy cells so that your metabolism will operate more effectively.

    Love, Mikie