Did Dr. Amand's Guaifenesin Protocol work for you?

Discussion in 'Fibromyalgia Main Forum' started by cfsgeorge, Aug 19, 2008.

  1. cfsgeorge

    cfsgeorge New Member

    YES or NO?

    No need to debate over its theory or studies since that is all over the net to read. Please share YOUR experience with the Guaifenesin Protocol. If the answer is YES, how much did it help you and how long did it take? thanks.
  2. spacee

    spacee Member

    I see no one has answered you so I will give you one person's experience...Mikie's. She used to be a moderator here.

    She was in so much pain that she was taking morphine. Now I don't know if that was all the time or for "breakthrough" pain but now as far as I know she doesn't take pain meds. She does take klonopin for CFS and that does cover some types of pain but she takes if for racing brain problems. And she is to the point where she is starting to wean off of that.

    I think it must have taken her a couple of years to really get the pain down. Then she went on to fighting mycoplasms and viruses using low dose heparin, antibiotics and antivirals.

    She is working parttime now and gave up her internet/cable to cut on expenses and just uses the library on Saturdays with her laptop to check in.

    If you would like more infor from her directly, post a new thread addresses to Mikie. I think she will see it.

  3. Mikie

    Mikie Moderator

    I hope you are doing well.

    CfsGeorge, if you use the search feature here to look up Guai in a Title search, you can read our previous posts regarding our experiences. Unfortunately, you will have to wade through posts discussing the pros and cons.

    There are some here, like me, who have been helped by the Guai but, like everything else, it hasn't worked for everyone.

    Love, Mikie
  4. cfsgeorge

    cfsgeorge New Member

    I did use the search function and the threads on Guaifenesin are all so short in # replies. i would have expected hundreds of replies to this protocol on here. At amazon, there are hundreds of positive reviews to his book. i have his book and have been to his website. It's a very controversial theory. I really don't want to debate it being both a doctor and a CFS patient myself. I just want to get a poll of whether it worked for the people here.

    I just dont' know if this protocol is appropriate for me as it is geared towards CFS/FM with fibro pain vs cfs fatigue. I have pure cfs/fatigue and no pain anywhere so i can't use his mapping of tenderpoints to measure any results. Dr Amand assumes that everyone with CFS must also have pain as well. I have every symptom of CFS and Fibro minus the pains from muscles, joints, or headaches. I want to see dozens or hundreds of replies to this protocol before i try it myself. thanks for your help everyone.
  5. meowee

    meowee New Member

    a huge NO. I spent a lot of money on that and it did absolutely nothing.
  6. cfsgeorge

    cfsgeorge New Member

    i want to thank you for putting all the time and effort into helping me with your long post. I know part of getting well is to help others. God bless you and your sister. I'm glad to hear that Dr Amand's Guaifenesin Protocol has worked for your sis and somewhat for you. I'm always happy to hear another success story.

    Since we are all so different, i really just want a quick poll of replies to this protocol so i can decide whether i should try it myself. I don't want to get into the debate or politics surrounding dr amand's protocol. It only makes sense for me to add up the number of "yes" and "no".

    I do want to reply directly to you about some of the info you've posted for me. Like i said, my CFS is pure fatigue type and no fibro pain of any type. You say it might be a viral type CFS for me? CFS dropped me to my knees gradually over 3-4months with no cold or flu previously. In fact, i never get sick even with CFS. i have no pre-existing diseases and i was 110% healthy my entire life before all this. I'm completely disabled now by exhaustion/PEM especially after all the failed treatments.

    Everyone's health history is so different that there is no way we all "fit" into the same treatment box. Do i fit a viral type CFS? not really IMPO as all blood tests are normal, gradual onset, no fever, no headache, no sorethroat, no pains, and no previous cold/flu/infections. The problem now is finding the right help w/o it harming me further. i've been to 4 docs now and the one that helped me the most was the one that said, "i can't help you."

    Being in SoCal, i have alot of options to CFS specialists. If i goto dr Chia, he'll assume it's an enterovirus and put me on anti-virals. if i goto a psych, he'll put me on an anti-depressant. if i goto dr T's FFcenter/hortorf in torrance, they'll put me on thyroxine and cortisol when everything else comes back normal. if i goto dr amand, he'll put me on the guaifenesin protocol. If i goto a LLMD, i'll probably be put on an anti-biotic treatment even with a negative lyme test. Do you see where this is going? it's endless......

    I've already done 3 months of acupuncture and chinese herbal medicine(the best in the country) w/o any improvement. In fact the acupuncture crashed me every single time just like massages, jacuzzi, swimming, short walks, errands, etc. My body perceives the needles in acupuncture and all physical activity as "physical trauma" and translates that into exhaustion/crashing/PEM even though i have no problems with the needles or any of those activities at all. It took me 3 months to figure out the needles were crashing me and it took me 2 months to figure out that the 10minute walks were crashing/PEM me every single time. These were all "therapies" under a doctor's care who didn't "get it." As both a doctor and patient, i had to get it b/c it hurts too much. From what i've experienced and read so far, I do think FM and CFS is the same illness except that one translates "physical activity/trauma" into severe pain and the the other into severe fatigue/PEM. some people have both.

    Furthermore, every doctor has taken their treatment to the point where they have put the drug or treatment above the patient. They eventually try to use me to prove their treatment MUST work for CFS. They have all lost focus on the patient and shifted their main focus to their drug or their treatment plan, unintentionally of course. They must now prove that their treatment works and i'm the lab rat to prove it. Unfortunately, nothing has worked and everything has made my CFS worse. There are only a X number of treatments i can attempt before i'm bedritten for good and financially ruined. What's my next move? Rest, Sleep, Dont crash and Let(RSDL) my body heal itself sounds good to me.

    I've not given up hope on a successful CFS treatment for ME but i will no longer rely on empty hope nor put the doctor or a treatment above ME.

    Thank you for all the info and for sharing what has worked for you and your sis. i hope someday i can contribute by posting a successful treatment to CFS as well. take care and sweet dreams.
  7. Mikie

    Mikie Moderator

    There was a group for Guai patients. The group had a doc trained in the protocol, a mapper, and a consultant/group moderator. Everyone in the group with FMS saw improvement, some dramatic. I met these people.

    I did it on my own with the book and the kind people here. A lot, but not all, of the failures are due to hidden sals. I believe having the professional support of a group makes a lot of difference.

    This protocol demands commitment and patience and strict adherence to the rules. For those of us who have been helped, it has all been worthwhile. I wish it worked for everyone but no one treament does.

    I disagree with Dr. St. Amand in that I do not believe FMS and CFIDS are one and the same illness. I have both. The Guai has reversed the sx of FMS but it has taken a long, slow round of various treatments to get me from being bedridden and on Morphine to being semi-normal and able to work part time. If you want to read about my regimen, do a search on "regimen" in title and open the one with my name as author.

    Love, Mikie
  8. SpecialK82

    SpecialK82 New Member

    Wow! I'm so impressed with your thought process and diligence in getting to the bottom of your DD.

    Thank you for all the wonderful information you have posted. It takes so much energy to post like that and your efforts are greatly appreciated!

  9. JoFMS

    JoFMS New Member


    I tried it for one year - strictly following the protocol by the book and on their help group.