Did you start guai with or without dr's ok first?

Discussion in 'Fibromyalgia Main Forum' started by Sonoradora, Aug 28, 2005.

  1. Sonoradora

    Sonoradora New Member

    I'm debating whether or not to start my guai today or if I should wait and see my doctor first. What do you all think?
  2. Sonoradora

    Sonoradora New Member

  3. Mikie

    Mikie Moderator

    And he was very excited about it. I gave him my book and got another for myself. He really knew nothing of the protocol, so it was up to me to learn all about it and supervise the treatment myself. My doc was always eager to hear how the treatment was working. This was before I found the specialist who was using the Guai in his practice.

    If one has a good doc knowledgeable in the Guai Protocol, so much the better; however, it is safe to do on one's own. The Guai has few side effects. I do think it wise to let one's doc know about it, though.

    Good luck to you.

    Love, Mikie
  4. 123sandra

    123sandra New Member

    I have tried the guaifenesin on Doctors orders. Here in England it is only on clinical trials. If you are taking the powdered form (Idon't know if there is any other) make sure you have something sweet at hand because it is a really bitter taste!!! It should make your symtoms worse before it starts working!!! I had to suspend the trial because I fractured my foot on week 7 and being on crutches made me have a really bad "flare up" Hope it works for you.
  5. bioman85

    bioman85 New Member

    I am anxious to start the Guai protocol, but I am concerned about the mapping. DO you think I can go on this protocol without concerning myself with mapping?
  6. bioman85

    bioman85 New Member

    I have had CFS for under a year, and I really do not have any pain, so how would mapping reveal anything useful?
  7. bioman85

    bioman85 New Member

    Actually was pretty helpful, because I have seen many people with pain improve with guai, but have not heard much about people with fatigue as their primary symptom. Good to know!!
  8. Mikie

    Mikie Moderator

    We would have a doc or nurse practitioner who would map throughout the process to check our improvement. I have never been mapped in the four and one half years I have been on the Guai, even by my specialist. He checks one or two areas and that's it.

    I certainly wouldn't let lack of mapping stop me from starting the treatment. You will know after a while that your tender points aren't as tender as they used to be. The ones on the outside of my arms at the shoulders were so tender that I could barely allow them to be touched. Now, they are not tender at all. Some of the newer ones are still a bit tender but nothing like they used to be.

    I also wouldn't let lack of a doc who is knowledgeable in the Guai treatment stop me from doing it. I do think one's doc should know about it and if he or she is willing to learn in order to help others--Great! Everything one needs to know to do the treatment is in the book. I did it just from the book for several years until I found my specialist. At that point, his help wasn't necessary.

    I will tell you that if I injure myself, I can still flare with some FMS pain but it is nowhere near what it used to be, requiring Morphine. If I get sick with a virus or CFIDS fatigue flare, I can have a little pain but again, it's mild.

    I'm still not well because of the CFIDS, but if I had not done the Guai, I would still likely be in bed most of the time and still on the Morphine for the pain. The Guai has freed me to be able to concentrate on healing the CFIDS.

    Best of luck to any who are on the Guai treatment. We have enough people here on it to help with any questions. Also, Claudia at www.guaidoc.com is an excellent resource for questions which are beyond the basics.

    Love, Mikie
  9. bioman85

    bioman85 New Member

    I'm confused...the guai treatment is based on the theory that chronic fatigue is a symptom of FM, so in your progression did you have fatigue first, and then the pain?
  10. Smiffy

    Smiffy Member

    You don't need a doctor's approval to do this, but you do need to follow the book exactly.
  11. bioman85

    bioman85 New Member

    the guai protocol theorizes that chronic fatigue is a symptom of fibro but the ones who do not complain about pain have a higher pain threshold.
  12. Mikie

    Mikie Moderator

    People with FMS can have pain and fatigue, and a lot of other symptoms. Pain is usually the worst symptom but not always. People with CFIDS have bone crushing fatigue. They can have pain, but fatigue is usually their worst symptom.

    There is so much overlap in these illnesses that it is impossible to separate them. Some docs feel they are just different manifestations of the same illness. The Guai will help with the pain and tender points. It will help with better energy during the day. If someone has sleep apnea, the Guai will not help that situation. That person will continue to have fatigue until he or she gets treatment.

    Many with FMS, and most with CFIDS, have chronic infections. Until those infections are addressed, it is difficult to heal. If a person improves significantly with the Guai, it is possible that person's immune system will be able to rid the body of the infection. It is possible but unlikely. Until the infections are addressed, the person will likely continue to be fatigued.

    There is no magic bullet and that includes the Guai treatment. That said, however, the Guai can be one of the most important and effective parts of one's regimen. If the Guai is started early on, it may be all that is needed to feel well. There are no blanket statements which fit everyone. We are all different.

    Love, Mikie
  13. bioman85

    bioman85 New Member

    I already got a sleep study done and I'm all fine, but I see that Dr. St. Amand believes that CFS is PART OF FM, and not a seperate disease, so using the guai should reverse the effects and make me stop being FATIGUED, correct?
  14. Jude

    Jude New Member

    I have seen a few people who had CFS and were not experiencing pain get better on the guai protocol. The key word is few. These people did not think they had FMS because their primary symptom was fatigue but upon being mapped they had the FMS lumps. Now, most of these people were young (in their 20's). It is possible for guai to help with the CFS for some people. However, not all fatigue is the result of CFS and will need further investigation. Our immune systems get so stressed out it leaves us vulnerable to other pathogens. And it is up to each of us, who are sick, to continue to investigate the reason for our fatigue. And it is also up to us to seek ways to treat our other symptoms that cause us fatigue. Not an easy path for any of us. I wish us all the best of luck.

  15. qnjamie

    qnjamie New Member

    I have the book but haven't had a chance to read it yet.
    Do you have to be on the guai for the rest of your life?
    Do you still have a hard time dealing with fibro symptoms?
    If it is so good why is it not widely used?
    Is it an antibiotic?
    Where would you get it if not from your dr?
  16. qnjamie

    qnjamie New Member

    There is alot of people talking about FM and CF, but has anyone had pain specifically related to Chronic Myofascia Pain Syndrome??

  17. Smiffy

    Smiffy Member

    "Do you have to be on the guai for the rest of your life?" Yes, it is a treatment for life. If you stop when you feel better, your symptoms will return.

    "Do you still have a hard time dealing with fibro symptoms?" You have a hard time as you reverse cycle, that is as the phosphates leave your body cells.

    "If it is so good why is it not widely used?" I've no idea, but know that people who have not followed the book absolutely exactly, or who have expected an instant cure , often put other people off.

    "Is it an antibiotic?" No, it is an expectorant that has been used for centuries, although it is not used as such in the protocol. I believe that it has no known side effects.

    "Where would you get it if not from your dr?" You can buy reasonably priced,good quality Guai from the store here,& help research & charity at the same time.

    Dr St Amand believes that CFS & FMS are the same illness, so in theory the fatigue can also be reverse cycled.

  18. bioman85

    bioman85 New Member

    It's funny - for the past couple weeks I've been getting these random pains all over - somtimes in my fingers, sometimes my knees, sometimes my feet. It's a weird pain tho, like yesterday I jumped over a fence, and my knees felt really weird, but in a painful sort of way - I can't even describe it!! o well, i'll start the guai soon and see what happens.

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