Depressing Guai News

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Apr 28, 2003.

  1. klutzo

    klutzo New Member

    What a bummer. Just read my second issue of the Guai group digest. In it, several of the long-term people were saying that they now know the rule of 2-3 months time to reverse each year since you became ill is not nearly enough, because it is genetic, so you have really been ill since you were born, even if you weren't having symptoms yet.
    I am 52. If I go by 3 months to reverse each year of my life, it will take me 13 years to reverse my FMS, and judging by my family history, I will probably not live that long. Do I really want the rest of my life to be filled with much more pain than it needs to be? I could not work, but was otherwise doing OK until I started the Guai. Now I cannot even drive to the grocery store most days, and have to have my husband take me. When I thought I'd have to endure this for a little over 2 yrs. I could stand it, but 13 years!!!
    This has got me re-evaluating the whole thing and has really thrown a monkey wrench into the works, so to speak.
    Any comments from other Gauiers here?
  2. Mikie

    Mikie Moderator

    This is not how it is supposed to work. Yes, there is some flaring in the beginning, but it should not last two years. It sounds as though the dose is just too high. You shouldn't be getting worse and in constant pain. The idea is to get to the dose which causes you to cycle. You flare and then have good days.

    I agree that our illness is genetic, and many of us can trace our symptoms back to childhood, but I don't think that means we have been sick all our lives. It isn't until something overwhelms the immune system that our illnesses are triggered full blown.

    The 2-3 months is just a rule of thumb. It can take less and it can take more. I kept increasing my dose to speed things up. I know that I am now at least 3/4 reversed in just under two years and I've been sick 12 years.

    Sweetie, the idea is to get you feeling better, not make you miserable for the rest of your life.

    Love, Mikie
  3. klutzo

    klutzo New Member

    I needed the pep talk after reading that stuff! Maybe I should cut back to 1,800 mgs daily and see if I still cycle. I have had to raise my Xanax up to the maximum dose I am allowed to take in order to handle this increase in pain, and I have not taken this much since 1988!
  4. Dayle

    Dayle New Member

    Klutzo. Do you have the help of a doctor? Sounds like you may need to adjust your dose down. I only need 300mg 2X daily & have been tempted to increase. But since after only 4 months I am feeling better I don't think I need to rush things. I do't really think it's exactly 2 months for 2 years cause; if I was back,where I was 2 yrs ago I would still spend most of my day in bed. The opposite is where I am, up & about enjoying life most of the time.
    Best of luck,
  5. lucky

    lucky New Member

    I just happened to come across an article written by Dr. Robert Bennett about Guai - which I found very imformative and worthwhile reading if you have not read it yet. You can read about it on Fibro Network.
    Take care, Lucky
    [This Message was Edited on 04/28/2003]
  6. nancyb16

    nancyb16 New Member

    I really hope we can clarify that part about genetics and clearing since I am 63 and have had my symptoms like it started after having the flu and never got better and that's when I feel I started to have fibromyalgia.That was for me alittle over 30 yrs ago and I'd hate to think how long it would take to clear. I have heard of many people in Dr ST Amand's book who are clear and are now on a maintenance dose, of Guai which I thought just keeps up with the ongoing phosphates so they don't build up again. I'd love for someone to be able to get the straight skinny on this subject because I was sure I read many times in the book that the titration of the dose is important and I think this is what is so indiviual and each one must find their dose, and I agree with Mikie that you are not suppose to hurt all the time and that you haven't found your right dose. I have had trouble getting on the Dr St Amand's website my computer may not be adequate, but if anyone could respond to this genetics and when do you start to count, it might put ours minds to rest. For me the possibility of having some better days far outways my fears of being in pain all the rest of my life.One significant but small victory for me is that I haven't been able to sleep on my left side since I had back surgery almost 20 yrs ago and now since being on Guai the pain and tightness that wouln't let me lay on my left side is gone. I can't tell you what it means to be able to lay on my left and right sides whenever I choose. It's those small victories.Sorry I talked to long some times my mind works better than other times and I have to take advantage of the opportunity. I really don't want anyone who is starting on Guai to panic it could just need clarification. I'd reread Dr St Amand's book for answers and for hope. Love to all
    [This Message was Edited on 04/28/2003]
  7. DonnaG

    DonnaG New Member

    Hi all,
    While on the guai, do you continue your pain meds etc...?
    I remember being in the book store and reading parts of his book, but I don't remember if it said anything about pain meds. Oh boy I'm rambling,,sorry.
    [This Message was Edited on 04/28/2003]
  8. Mikie

    Mikie Moderator

    I wouldn't put too much faith in Bennett's article. The study he cites was so flawed as to be totally useless for accessing the efficacy of the Guai treatment.

    There were too few participants and many dropped out during the study.

    Everyone was given them same dose.

    The importance of eliminating sals was not well understood and much of the Guai was probably being blocked.

    Someone posted an article which stated that while the Guai does work, it may not be for the reasons theorized by Dr. St. Amand.

    I simply do not believe the placebo effect could take me from Morphine to needing nothing for pain most of the time. It would also not rid me of tenderness in my tender spots.

    Love, Mikie
  9. Manwithfibro

    Manwithfibro New Member

    I am so happy for you that this worked. That is great news.
    Yes, I do not believe it is a placebo affect either. I started Guai way back when thinking it would help immediately. I did not know about cycles etc. After one week
    on medicine, I got so bad that I scrambled for Dr St Amand's phone number and called their office. I told them I am atleast 3 times as bad as before Guai. They claimed that
    this confirmed Fibromyalgia and to hang in there.
    I also have very foul urine when increasing dose. This tells me that it is in fact pulling something out. My frustration is that I would have thought I would be much better by now and it is hard to come to the realization that this may be as good as it gets. The constant pain has caused my blood pressure to increase, my joints pop and crack, and painkillers do little if I flare. People that knew me 8 years ago seem to think I am much better. Guess when you are in pain, it is hard to remember even more pain.

    Take care
  10. Tibbiecow

    Tibbiecow New Member

    Keep reading the Guai digest, you'll learn something valuable at some point. I think maybe you need to back off your dose a little. One trick that works for some people, but not all, is to stop the guai for a day or so, and then start again. This somehow tricks your body into forgetting the pain and decreasing the pain level. This is how I am dealing with my tendons cycling, and the terrible knee pain. (I'm sorry, I think it might be me that has led to your discouragement on the guai digest support group!)
    Anyway, I had been feeling much better up until my knees started cycling, and I hear that only some people have this problem, but it tends to be the last one, the home stretch but unfortunately a painful home stretch. My doc has given me effective pain meds to deal with this.
    I sure felt awful when I started the guai, I was bedridden and so my doctor reduced my dosage. After about two weeks, I started having a few good days. I know that without the guai, I would be bedridden with a few half-a$$ days here and there.
    Hang in there, I know you're a tough cookie. You can make it, keep reading the guai digest, send a post for support and help and it will come, and you will feel better. You WILL feel better within the next month or so, provided you are not blocking on any of your supplements. You can partially block on things, slowing your progress, I just found this out, my deodorant was an evil one!
  11. Mikie

    Mikie Moderator

    For some of us, it's a God send. For some, it doesn't seem to work at all. Most are somewhere in between. The
    Guai, I believe, is one of the more difficult treatments to stay on top of, especially when something changes.

    Love, Mikie
  12. klutzo

    klutzo New Member

    Brilliant minds think alike (har, har). After taking double doses of antihistamines and muscle relaxers last night, and still only managing 3 hrs. of sleep (again) due to the extreme pain, I decided to take a couple days off the Guai, and when I restart, I'll start one dose lower at 1,800 mgs. daily, and see if I will still cycle at that dose. I am not willing to take narcotics again to handle this pain, after I almost kicked the bucket quitting them cold turkey after 12 yrs. (5 1/2 yrs. ago), so the pain has to be manageable without any heavier drugs than what I already have. I feel sure my Rheumy (who does not believe in Guai since Bennett's study) will not be willing to see me go backwards in my use of drugs.
    From the pain I've been having, I find it hard to believe that Dr. St. Amand does not want his patients taking anything...if I had not had Xanax last night, I would have shot myself, it was so bad! I had forgotten what pain this bad was like. This morning the phone rang, and it was friends from out of town wanting to go out to dinner with us. I just let the machine get their message, because when I thought about trying to go out, I started to cry.
    I'm glad you suggested this break, since I had already done it and wondered if it was OK to do.
  13. nancyb16

    nancyb16 New Member

    I have following the posts about the guai and whether it works or not and for me I've been using it such a short period of time I am not affected by the posts,Iam also sure that I have not experienced pain like I had when I was first sick, when I'm cycling, but It may be that I'm not taking enough. I started on 300mg2x week and I just recently went up to 1800 mg haven't noticed any big difference yet.I'm having trouble recognizing any good days and am waiting for that day when I can do so much more.I did go back to Dr St Amands book and reread the pages on pain pg244 thru sleep pg254 for some of the reasons he doesn't like to use all the drugs mentioned and his theory is not bad, that we really can be more fatigue from the rebound effect. I did get that he does prescribe or allow his patients to use these drugs but suggests they use the lowest possible doses. Have to run now to pick up grandson from school. Love to you and please let us know how you feel after no Guai for a few days.
  14. Mikie

    Mikie Moderator

    When I first started with the Guai. As I got better, I needed it less and less and now rarely use it at all. I feel so bad for everyone who has such pain.

    I do think the Klonopin I started useing for sleep helped with the pain. Seems it may disrupt the pain signals in the brain as it regulates the firing of the neurons. I took it for sleep, not for pain, but I guess that was just a bonus.

    Love, Mikie
  15. Tibbiecow

    Tibbiecow New Member

    Hang on, sweetheart,I hope your pain gets better.
    The combination of Neurontin and Klonopin has been the magic one for me, I'm sleeping like I never have and the Neurontin has turned town the pain volume so that when I do hurt, it feels different, It's like, Oh, my knees hurt. Before, it was the same level of pain, but my body would almost get panicky, like, Oh, no, my knees hurt, they hurt, what are we gonna do, oh dear, etc until I took a Klonopin or a pain pill; if I didn't the pain would build slowly until I would get a migraine. You could probably combine yours with Xanax just fine. But ask your doc, for a lot of people. It can be similar to a pain pill because it really lowers the pain threshold.
    The makers of Neurontin are really pushing it, they are giving out samples like mad. There is a Patient Assistance Program as well so I am getting mine free.
    Also, maybe you could tell your doc you have been congested and you want to use pure guaifenesin, and it is much cheaper by the prescription 1200 mg dose. Worth a try, anyway! At my Costco Pharmacy, it is quite a bit cheaper that way, I split mine in half for a 600 mg dose.
  16. klutzo

    klutzo New Member

    I tried Neurontin and it made me so tired and so painful that I could not even walk to the mailbox. I was only raising it 100 mgs. per week. and never even got to the effective dose after 7 weeks on it. It can cause severe muscle pain in 2% of those who take it, and after a friend told me that had happened to her son, I realized that might be what was making me hurt, so I slowly withdrew and the pain went away. Of course, I started Guai and two months later when I got to 2,400 mgs. daily I had bad pain again, but this is different. The pain from Neurontin was accompanied by severe fatigue and the worst fog I've ever had. I didn't know if I was coming or going on Neurontin. I'm glad it worked for you, but as for me, I went back to the natural form of it, GABA, at the maximum dose, which I have no trouble tolerating or affording (Neurontin was breaking the bank).
  17. TNhayley

    TNhayley New Member

    I would suggest that after you take your break ... you retitrate your dose instead of going straight to 1800 mgs. You might be able to discern the more subtle sx of cycling this second time around. You do know that you cycle, and that is a good thing, but you don't want the quality of your life go down! Start back at 300 x2, and maybe only go up 300 each time ... and record your progress carefully. Keep us posted!

    Another thing that might cheer you up ... I read somewhere (sorry I can't remember where right now) that people that effectively manage chronic illnes may actually live LONGER. You might beat that family history yet! Love,