? for anyone who started guai in Nov./or anyone on it

Discussion in 'Fibromyalgia Main Forum' started by seaview, Mar 9, 2003.

  1. seaview

    seaview New Member

    I started guai in Nov and worked my way to 1800 mg a day before I started cycling. I have consistantly felt worse since then.My pain level is off the scale,my fatigue is horrible, and my brain seems to have shut down. I thought I had the sleep thing down when I was using benadryl but for the last month I am back to horrible insomnia. Basically I am a mess and still have a family to take care of. So, I am wondering how long it has taken you all till you had some good days. I am not blocking and am very careful about everything. I gave up makeup and my kids deal with my plants. I changed all my other products as well. I have a doctors appt. coming up and he will want to know how guai has worked and I hate to say that I only feel worse.I really believe it has merit and am willing to continue on but he may be hard to convince....Your experiences with guai and time lines to feeling some good days are very appreciated.....Thank You for your time....Kathleen
  2. obrnlc

    obrnlc New Member

    hi kathleen! Sorry to be discouraging but i think you have to be on it alot longer--from what i've read, the aprox reversal time is 2mo./year of having fm. I started in september and was determined to stick it out and reverse (mikie--moderator was my inspiration!) but the pain was so hard to take while on it (1200mg/day) that i was up to 50mcg of duragesic to function. When my pain doc decided i needed to be off pain meds, the drug withdrawal was more than i could handle by itself, so had to stop the guai. Rheumy said to suck it up and stick with the guai without pain meds, i just wasn't that strong. (a different rheumy acted like i was nuts to be on it at all). So, after i try to deal with pain their way (exercise and improved sleep) i hope to get back on it, not sure if i go back to square one or pick up where i left off in reversal process. GOOD LUCK!!!!! Laurie
  3. Mikie

    Mikie Moderator

    Once cycling begins, you can be sure the Guai is working. If the Guai flare is too much or lasts too long, you can cut back on the dose and still be assured that it is working, just at a slower pace. The Guai flares should not be so bad and last so long that one cannot function from the pain and other Guai flare symptoms. Sounds like you cycled on and never cycled off with some good days. This is not how it's supposed to work. You are taking too much. Cut back and see if you don't start feeling better.

    Later, as you get used to the dose, you can always increase it to speed things up. The Guai, like anything else which requires tweaking of the dose, should be started out slowly and gradually increased. Then, if one is on too much, it should be cut back down. The problem is that there is some lag time before decreasing or increasing the dose shows a difference.

    Love, Mikie
  4. rfg958

    rfg958 New Member

    hi, I've studied guai for years and agree with Mikie, you are probably taking a bit too much. Cut way back and see what happens, keep a diary and you will probably soon see patterns developing. good luck
  5. willow

    willow New Member

    I tried to write you earlier but was having puter problems.

    I have been on guai for 2 yrs and 8 mths. I adjusted the doseage myself using Dr. St. Amand's book, and guai from Wal-mart. It didn't take long for me to start cycling, since I am very sensitive to most meds, and I began cycling at 300mg twice per day. My first and worst cycle lasted 4 mths. It took me 1 1/2 yrs to not be bed-ridden anymore. I took this form for a little over two yrs. I almost quit after the first year, but Mikie and Sky convinced me to "hang-in-there" since I had been through the worst of it.

    Then my mom, (who is our local support group leader) found a nurse with fibro who had been to Dr. St. Amand in CA, first for treatment, then to learn how to do body-mapping, (he describes this in the book).

    The nurse has a "compounding pharmacy" with a pharmacist willing to try diferent "mixtures" in her town. They found that the majority of guai that you buy at most pharmacies is very weak because it is full of "fillers."
    He agreed to take 100% guai powder and put it into capsules. This is working soooooooooooo much faster!
    My mom got this nurse to come to our town (an hour drive for her) and they got a spot in a docs office 2 days per week to map people. They fax the script to her pharmacy and the patient recieves their 100% guai in the mail in about 2 days.

    Several people in the support group have come 'completely' off their pain meds in 2 to 3 weeks!!!

    It does vary and this is the minimum. For some it took increasing their doseage a time or two and/or going over their products to be sure they weren't blocking before they began cycling.

    To the best of my knowledge, this is the only clinic in the U.S. (except Dr. St. Amand's) that does this. It is in central FL. I do not know where you are, but, if you or anyone else interested are not close enough to one of these clinics, maybe you could just find a compounding pharmacist in your area that would be willing to do this for you. Or, maybe your doc could fax to this pharmacist to have the 100% guai mailed to you. It really helps to be mapped because you can "see" the lumps and bumps breaking up, and if you began blocking, you can catch it faster, which also cuts down on the reversal time.

    Since I (and a few others) are so sensitive, we had to have him make up some 200mg capsules with time-release. Now my doseage is 200mg twice per day.

    I hope you get this before your doc appt. and I hope it helps. Your doc does know that you are supposed to cycle and "get worse" before you get better, doesn't he?

    I have been up all night and am very sleepy, so I hope this makes sense.
    Let us know how your appt goes/went?
    Love and Prayers, Lisa
  6. Mikie

    Mikie Moderator

    Thanks, this is great info. I knew that pharmaceutical companies used fillers, but I didn't realize one could get pure Guai. I guess what confuses me is what difference does it make whether there are fillers if there is 200 mgs. of pure Guai versus 200 mgs. of Guai and fillers? Is the pure Guai more readily absorbed? I use a time released type of tablet. I am now up to 2400 mgs a day.

    Where is the clinic in Florida and what is the cost for a workup?

    Love, Mikie
  7. klutzo

    klutzo New Member

    I live in West Central Florida and have been on Guai for about 3 months now. I am very interested in knowing where this clinic is...could you provide their 800 number if they have one, or their regular phone number if they don't?
    Thanks, Klutzo
  8. willow

    willow New Member

    Mikie,
    you would probably remember my mom, she used to post under the name "Pixie."

    She could probably answer your questions better than I could , I just called her to make sure it was O.K. to post the phone # on here, and she O.K.'d it.
    The clinic is in Dade City (just north of Zephyrhills)
    contact # is 352-523-2570.

    I'm not any type of expert, and am only stating my personal experience, compared to testimonials from some in the support group (which is in Zephyrhills).
    But, I would think that it would be more readily absorbed in a powder form than the pressed tablet form that I was on for the first 2 years, Because those starting out on this pure guai have a much quicker response time than I did.

    You can call the # above for any other questions.
    Love and Prayers, Lisa
    [This Message was Edited on 03/11/2003]