Poll-How many of us tried guai but it didn't work for me?

Discussion in 'Fibromyalgia Main Forum' started by Tibbiecow, Apr 3, 2003.

  1. Tibbiecow

    Tibbiecow New Member

    Did you give guai a try but it didn't work?
    Give us the details.
    Was it too restrictive?
    Was the reversal too painful?
    Give us the details.

    Tibbie
  2. Tibbiecow

    Tibbiecow New Member

  3. VickyB

    VickyB New Member

    I stopped taking Guai because I was even more tired and fatigued on it. I have been off of it for a couple of weeks and have started to get my strength back a little. Plus my legs were bothering me alot more on the Guai - sometimes I could barely walk. I just could not see the light at the end of the tunnel.
    I would encourage anyone to try Guai though because it could work for you!! Maybe some day I may try it again but for now I need as much energy and strength that I can get to take care of my family!!
  4. Mikie

    Mikie Moderator

    I'm sorry you had to quit the Guai. Do you mind if I ask how long you were on it and what the dose was that you were taking? It is possible that your dose was just too high. Everyon reacts differently and some a very sensitive to the Guai, especially in the beginning.

    The fact that there was more pain is probably evidence that it was working.

    Love, Mikie
  5. teawah

    teawah New Member

    trying the guai protocol. I have been doing alot of reading on the subject and from what I read if you don't REMOVE all salicylates from your diet, body lotions, make-up, hair products, EVERYTHING, it won't work right. There are salicylates in SO many things that it makes me wonder if possibly some of the people who try it don't realize just how important it is to remove all use of them and therefore not get the absorbtion of the guai.

    I have heard from other guai users that it is VERY important to use the protocol EXACTLY as it says. If I do try it, I will make darn sure that I follow it EXACTLY as described so I will truly know whether it is going to work or not.

    Anything you do or use usually comes with directions and so many times we decide for ourselves that the directions aren't that important and we don't follow them exactly. If they weren't important, they wouldn't be there.

    I hope that if I can try it that it works for me.
    teawah
  6. VickyB

    VickyB New Member

    I did try cutting my dosage in half-150mgs twice a day. Everytime I try to take a medication, it always becomes toxic to my system. I have read literature that says medication does become toxic when having CFIDS. I do not know if this is true or not for everyone. As far as being Sal-free, I did not feel it was too restrictive at all.
    I would still recommend trying Guai. to anyone with FMS though and I will try it again some day.
  7. Mikie

    Mikie Moderator

    I'm always curious when someone either has too painful of flares or someone says it doesn't work. My new doc says that he has people on greater than 2400 mgs. a day and still it hasn't worked for them. He, of course, can't know whether or not his patients have eliminated all sals, but these patients have told him they have been very careful with their products. I guess it's just like everything else; it works for some and not for others.

    If I were you and were deciding to try the Guai again, I would just take 150 mgs morning only and see how it goes. The Guai only works when the kidneys are eliminating fluid, so during the night, it doesn't work as hard as during the daytime. I was on 1800 mgs., 900 in the morning and 900 at night. I decided to try 1200 in the morning and 600 at night. I flared just as though I had increased my overall dose. I'm now at 2400 mgs. and there is powdered stuff on top on my urine every time I go, lots of it. My new doc is very impressed with my progress.

    Good luck in whatever you decide to do. Another alternative is to cut the dose to 100 mgs. once a day and then go to 100 mgs. twice a day. Sometimes you just have to play around with this stuff, but the dosage is totally up to the patient.

    Love, Mikie
  8. VickyB

    VickyB New Member

    Thanks for the reply-I will take your advice and start 150 mgs. this morning and see how I do.
    I would like to ask whether or not your fatigue has increased with the Guai??
    Also have you been losing your hair?? Mine has been falling out by the handfuls since I started with the Guai.
    I see posts from people on the Guai. that say their fatigue has not been helped. I am just wondering if the Guai. is making the fatigue worse. There are so FEW things that can help with FMS, I just wonder if we are overlooking side effects because we want to be cured so badly.
    Sincerely, Vicky
  9. Mikie

    Mikie Moderator

    Geez, this sounds like hypothyroidism. If you haven't had it checked lately, I would get it tested. Fatigue should not be increased with the Guai. In fact, at some point, it should produce a slight respite from the fatigue. Now, since you had been in so much pain, it's possible the pain has caused the fatigue.

    Dry hair which falls out, dry skin, and fatigue are all symptoms of low thyroid. Even if you test in the normal range, it may be helpful to try the lowest dose (25 mcgs) of Synthroid. I did and it has helped tremendously.

    Good luck.

    Love, Mikie
  10. VickyB

    VickyB New Member

    It is funny that you bring up thyroid-I went to the doctor Monday and he gave me a chart to record my basal temp. every morning for l0 days.My temp. has been about 97.8. Is this in the normal range??
    Thanks for your input. I feel as though I am falling apart.
    Thanks again, Vicky
  11. Hippo

    Hippo New Member

    an allergic reaction to the guai and had to discontinue it. I got a horrible rash around my mouth and the bridge of my nose and my eyelids. The rash got so painful it was keeping me awake. I never read anywhere about this, but I know it was the guai because as soon as I discontinued it, the rash started to go away, and when I re-introduced the guai, the rash came back.

    Hippo
  12. Mikie

    Mikie Moderator

    Dear Vicky,

    The most reliable way to take the temperature is in the armpit before rising in the morning. Temperatures needn't be much lower than "normal" to indicate hypothyroidism. My doc didn't even have me do that. He just ordered the 25 mcgs. of Synthroid and checked my thyroid tests 6 weeks later. I was feeling better and my labs were even better than just normal.

    Dear Hippo,

    I am so sorry about the allergic rash to the Guai. I guess we can be allergic to almost anything, but the Guai is so benign that side effects are pretty rare. Gout medications do the same thing as the Guai, but they have harsher potential side effects than the Guai.

    Love, Mikie
  13. beckster

    beckster New Member

    is so interesting. The details one gets on this board are something. I'm learning and learning fast as I can absorb.
    Also so many areas one can learn about. And the experiences combined with the theories are SO VALUABLE.
  14. srollins

    srollins New Member

    Don't want to sound stupid but what is the indication of the powder on the top of the urine.I am really new about this Guai



    Thanks, Shirley
  15. Mikie

    Mikie Moderator

    The phosphate debris is a tiny crystal and these float on top of the urine in the john. The crystals also form tartar on the teeth which can easily be removed using a dental tool. When there is a lot of debris being excreted, if you let the urine sit in the john, you can see the buildup in the bottom of the bowl. This happened to me when I increased to 1800 mgs. That was when the Guai treatment went into overdrive in my system.

    The reason the Guai produces flares is because it's painful when the body starts ripping these little crystals out of the soft tissue. This happens much faster than when the debris was deposited. It's kinda like pulling tiny fish hooks out of our soft tissue.

    Look not only for this debris which often appears like baby powder on the urine, but also smell your urine. It will take on a "Guai" smell. Your sweat may also start to smell different.

    BTW, you can speed things up by simply taking calcium with meals. This will cause your body to excrete phosphate debris through the intestines as well as the kidneys. There is a chemical relationship between phosphate and calcium. The body will always try to balance the two. This may be why people are having good results with the coral calcium.

    There is a lot of mitochondria in the brain and thus, a lot of opportunity for storage of debris in the brain. The Guai almost immediately cleared up my Fibro Fog. Not everyone reacts in the same way, but if you are really tuned into your body and brain, you will start to notice the subtle changes.

    Love, Mikie
  16. LauraC

    LauraC New Member

    I tried guai for several months, but it made me feel so badly that I just had to give it up. I never had any good days. However, I have found if I avoid salicylates like the plague, it really helps. I actually feel less fatigued and sleep much better if I avoid them in the same way I would if am taking guai. I think the guai protocol is on to something, but I am not sure that upping the dosage until pain occurs is the correct way to go. Dr. St. Armand knows far more about it than I do...I am certainly not a doctor, but I am not willing to go through the agony for that many years for undetermined results.
  17. Joey2276

    Joey2276 New Member

    started out at 600mg twice/day and this was the right dosage. It helped certain symptoms. Stiffness in joints got quite a bit better, as did heart palpitations and dry/sore eyes; each symptom about 60% better. Most symptoms like fatigue, depression, concentration problems, low stamina etc kept getting worse. Eventually I tried magnesium malate (from nature's life 2-3 pills per day) and this helped as much as the guai with those 3 symptoms so I stopped the guai and have been on mag for the last 4 years and off guai. It took a year or so to replace magnesium deficits which I'm guessing were severe. Dr St Amand helpd me a lot and has helped others a lot but he thinks guai cures fibro and if it doesnt there's something else going on and this is just madness or something worse. Dr Bennet consulted dermatologists who said the amount of salicyclic acid you'd have to apply to the skin to block the action of guai would be massive applications of salicyclate rich make-up several times per day. all this bogus stuff about the tinniest bit blocking it.....makes me angry...I remember not making out with my girlfriend because I was scared her make-up would get on me and block the guai!! its amazing how desperate we can get.

    Joseph

  18. Joey2276

    Joey2276 New Member

    forgot to mention....I did have some bad flares but was more than happy to have them since I knew it meant the guai was working. Another thing that happened the first several weeks when it was really going to work was that my urine got much darker; almost brownish at times and got a unique toxic smell. The guai defintiely got some bad stuff out of me but I think that bad stuff...the phosphates or whtever it was..was only one of many causes of my fibromyalgia.


    Joseph
  19. Mikie

    Mikie Moderator

    Dr. St. Amand has never said that Guai "cures" FMS. He says it can reverse the symptoms of FMS. This is an important distinction.

    As for the sals, each person is different. Some can tolerate none and for some, it doesn't seem to matter how much sals they are exposed to. Everything is trial and error. I can tolerate a few sals but not too many.

    As for the magnesium, Guai and magnesium are not mutually exclusive. Most of us on the Guai treatment continue to take our minerals.

    There is a lot of confusion and misinformation regarding this treatment. Despite the fact that it has helped a lot of people, Dr. Bennett continues to discredit it. I do not know what his agenda is, but it's hard to argue with results.

    Love, Mikie
  20. TNhayley

    TNhayley New Member

    Guai is not something that will necessarily show results quickly. To me, results kind of snuck up on me. I would realize that one symptom or another hadn't occurd in a while ... or that I was able to accomplish more and took it for granted. A symptom journal is a very good idea because you can look back and see what has improved. Alao, the longer you have been sick it seems the longer it takes to start seeing results. This also seems to apply to *how* sick you are. Dr. St. Amand estimates about 2 months *reversal* time for every year you have been sick. If your symptoms become intolerably worse, you are on too high a dose. You do not have to remove or worry about sals in your diet. However, if you are hypoglycemic, as 40% of us are, you will not see results from Guai until your hypoglycemia is under control. I would think the same applies to hypothyroid as well or any other coexisting condition. For those just starting out ... it is important to follow the protocol exactly and as you become familiar with it and learn how to read your response and guage your body you can tailor it to your needs. This is just my opinion and not endorsed by Dr. St. Amand, but it is how I do it after having been on guai for 2 years. It gave my Mom her life back when she was at her lowest, had tried sooo many drugs and was bedridden and suicidal. I have never heard of anyone on 150mg ... did you say you are taking the powdered form? The Guai protocol is written for using the long acting, or timed release Guai. You may be getting hit with your dose all at once ... I would suggest trying a long acting, sustained release Guai if you keep feeling slammed. For those who have had an allergic reaction to guai ... one possibility can be the fillers in the pills themselves. Some people that have had trouble digesting Guai have found a solution by putting the pills in a gel capsule. There are many options, many different manufactuteres of Guai. As for sals ... you kinda have to either believe Dr. St. Amand or Dr. Bennett ... they have polarized viewpoints. My only response to this is to cite my personal experience and that of hundreds if not thousands of people on the guai support group. Some of us are extremely sensitive to sals and some of are not. I personally am not ... but others I know have *blocked* simply by walking on freshly cut grass. This is why it's important to follow the protocol exactly until you feel you have reached a point where you can *test* your sensitivity. Dr. St. Amand's assistant and coauthor Claudia Marek posts answers to questions on their support group daily as do a group of *old-timers* who they call their *Admin Team*. They do this voluntarily on their own time without compensation ... like many here. I say this because you don't have to struggle through the Guai protocol on your own ... they will help you every step of the way - but only with Guai and hypoglycemic issues - their focus is narrow in that respect, but good for newbies as it can seem overwhelming at first. There is another Guai site run by a lady named Tesa which takes a broad view of the protocol. I personally think Guai may not be the *only* answer ... and I treat my symptoms as I see fit and utilize an integrative approach, but I would not go without my Guai. If I can offer assistance to anyone about Guai, please feel free to email me at hayleydesignit@aol.com. Wishing health to you all .... Hayley