Guai digest is a big bummer for me

Discussion in 'Fibromyalgia Main Forum' started by klutzo, May 3, 2003.

  1. klutzo

    klutzo New Member

    I started getting the guai digest a few days ago, and if I had read this before starting the Guai, I would never have started. I decided to try it mainly because I respect Dr. Starlanyl so much and she swears by it, but docs can be duped too (I know one who is supposed to be the best in Florida for Fibro who has fallen for snake-oil schemes several times).
    If this is supposed to support and encourage, it is having the opposite effect on me.
    Now I read that blocking will present as extreme pain, so how can I tell if I am blocking or cycling?
    I read that cycling may be no different from normal flares and remissions, so how can anyone tell if they reach cycling dose or not?
    I read posts from folks who were only sick for a few yrs. before starting Guai and who have been on Guai for more years than they were sick, but are still describing symptoms that are worse than any I have had in years. Where is the reversal?
    Then I read that just brushing against a plant will cause blocking, so you need gloves that go all the way up your arms like guantlets to be outside. I live in Florida and I am not an indoors kind of person, so that is ridiculous. I thought I had to touch plant sap or juices of some kind to block, with the exception of very high sal plants like geraniums and mint that can't be touched at all without gloves.
    I am beginning to think this is just a mass hallucination fueled by a strong desire to find an answer.
    I have 3 huge bottles of Guai left, and I intend to keep on taking it and sticking to protocol. When I get through with those bottles, I will have given it more than 7 months. If I don't see some change, I'm outta there.
    Bah humbug,
  2. seaview

    seaview New Member

    If I remember correctly you and I started the guai at about the same time in November. I have been very careful regarding everything(products,plants,etc)to the point that my kids have taken over my plants....unfortunately some of the plants didn't make the switch! :) Anyhow, I have watched and read how you were doing on it and I myself have struggled so much as my body has just gotten worse in regards to pain. I have taken less guai and done everything I know to do according to the book and posts from here and gaui digest. I posted yesterday after I had gotten back from a first appt with new chiro. You can read it for the details. He did understand the theory behing the guai and didn't dispute it helping. He DID give me lots of other info.Anyhow,he said he wanted to start with sleep issue and gave me a bottle with valerian root and passiflower in it. I told him I knew that those were om the no list because of sals. He insisted to me that these 2 herbs were not a problem with avoiding sals. He said for me to take the bottle and think about it. Well, after thinking and debating I decided to try them. Well, I slept last nite all the way through.Now, my body is very,very sore where he did the mapping. My shoulders have been bothering me for some time now and he did some rubbing on them that has definately inflamed it. I actually kinda half laughing to him said when he was mapping..."did I ask you to do this?" it was hurting so much everywhere he touched. I mean I hurt so much at every point. All that to say this Klutzo, I do believe that the guai must work....there are so many testimonies to that fact but for right now I am going to take a break with the guai and see what this doctor can do for me. He is the first to seem to have any understanding about the workings of the body and he had lots of answers and he spent 90 minutes with me. I have never had that kind of attention.I feel he has alot to offer me right now and he believes in the things I have been asking for years(candida,mycoplasma,etc) so I am going to try and get as much help as I can from him.We are only allowed 20 visits a year with insurance but if after 20 visits I am getting help I will find the money to continue with him. It feels so good to talk to a doctor who is really listening and says...hey, you have alot of things going on in your body and what we need to do is find out what is going on. Not a drug to pacify it but an answer. He explained to me why people raise their eyes to the oxycontin.I just started it and am not really helped a whole lot by it. Anyhow, I just wanted to let you know that I do understand your feelings because I have felt them also. I do believe in the guai but for now I must try something else. I do pray you can figure it all out Klutzo and get the relief you need and desire. You have been a real encouragement to all of us and I appreciate your honesty and so on. I will keep you posted to how it is going with me. I think it will be a long journey but I am hoping a healing one. Blessings to you....Kathleen
  3. fibrorebel

    fibrorebel New Member

    I bought the guai and ordered the book, and have at this point yet to try the guai. I don't think there is any way for me to follow the protocol to the letter and I understand that you have to or it is useless. There is too much of that proto that conflicts with other things I am you said it is nearly impossible to tell the difference between blocking, cycling, etc. I certainly am not discouraging the use of it and the effectiveness for others have had much success on it. Maybe later I will try again...I wish you success in it and give you much credit for giving it a chance. love and peace, Rebel.
  4. klutzo

    klutzo New Member

    I am truly glad you have found such an understanding doctor, but he is WRONG about the valerian and passionflower. They are strong plant extracts and full of salycilates. Some medical people don't understand that BOTH chemical and natural sals must be avoided....they think you only need to avoid the chemical ones. Boy, do I wish that were true.... We'd just stay away from Pepto Bismol, Aspirin, and a few others, and we'd not have to worry about Aloe in everything or touching plants, etc.
    If you notice in my post, one of the experts in the guaidigest said that blocking can present as extreme pain, so taking the valerian and passionflower blocked you and may have been the cause for your increase in pain. So, how can you tell a cycle from a block, which is the exact opposite of a cycle? Makes my head spin.
    I don't think that just because a lot of people say it is working for them, that this necessarily means it really works. Like I said, some of these long-term Guai users talk about how much better they are, but their symptoms are still horrible and worse than mine are now. I have come a long, long way without any Guai. How did I do that, if the Guai theory is correct? I should have been getting worse and worse, as more phosphates were deposited. To be fair, while I've improved in many ways, I have gotten worse in others.
    It is all so confusing and we need some GOOD scientifically controlled studies on it, not the poorly constructed one done by Dr. Bennett. We also need some way to make this treatment easier to do, because if I am having this much trouble with the strong self-discipline that I have, many people will just not be able to handle all of the requirements of this protocol as it exists now, and compliance will be very low, even if recognition of this treatment comes tomorrow.
    Lastly, and this is very unscientific, some folks here know I had a reading with a very well known psychic who has helped many police depts., been on TV, etc. and he told me in no uncertain terms that I had Fibro and that it is caused by a virus. Since he had no way of knowing I had Fibro ahead of time, and also said many other specific things that were true, I find his claim that it's caused by a virus to be at least as credible as other theories.
    However, I will keep up with the Guai since I just bought a 3 month supply at 2400 mgs. daily, and by the time I run out I will have given it about 8 months, so I should know better if it will do anything for me.
  5. Mikie

    Mikie Moderator

    And some time and patience. The first thing which happened for me was an almost instant lifting of the Fibro Fog when I started the Guai. I decided that it must be doing something for me and if all it did was address the fog, that was good enough for me.

    The whole first year on the Guai, the cycles were not all that different from typical flaring and remission except that I had some really good days here and there. What I did notice was that I needed to take strong pain meds less and less. I told my new doc, who is really into the Guai, that it took about a year before I could really say it was making a big difference, except for the fog.

    Now, two years after starting the Guai, I would have to say it's one of my most important treatments. I haven't take Morphine since Thanksgiving after a flight, and then only one pill. If I start blocking, I notice some pretty heavy duty pain starting in my legs and hips. This has happened a couple of times when I pushed the sals.

    I can handle a few sals. I don't bother about shampoo, rinse, and soap as they are washed off the skin. I am careful about lotions and do not take herbal supplements. I do have to use spf 45 sports sunscreen down here on my face chest and hands, and it contains sals. Using it doesn't seem to be enough to block. I don't wear gloves when I cut fresh herbs for cooking or trim dead leaves off plants. I think at this point in my treatment on 2400 mgs. that I can afford to take a few more chances than I could when I first started.

    If I had not been patient and waited it out that first year, I would not be enjoying the benefits of the treatment. For me, it is not a hoax or a placebo effect; it works. That may not be the case for everyone. My progress on the Guai was almost exactly as described in the book. Each time I increased the dose, I flared, once so painfully that I went back and had to try again later. Some of my tender spots are just about gone.

    Unfortunately, FMS is only half the game for me. My CFIDS is worse. While I am getting a lot of relief from the Doxycycline, I am not well yet. My recent experience with total remission while on Famvir leads me to believe that a Herpes-family virus is keeping me sick. This is my next challenge. I may even resort to trying the Olive Leaf Oil if I cannot get an Rx for the Famvir. I would have to "pulse" it and chance blocking the Guai while using it.

    Life is complex for us. I don't know what to say to those who are in so much pain with the Guai. It isn't supposed to work like that. If I were in more pain on the Guai, I would cut the dose back until cycling returned and just wait and be patient to see what happens. One can always increase the dose down the road to speed things up again.

    Love, Mikie
  6. nancyb16

    nancyb16 New Member

    I too have found the cycling and flare symptoms to be very confusing, but bottom line I have never heard a more logical reason for the lumps and bumps and have spent lots of money on the supplements to heal my immmune system, etc. etc. which because I can never get all my ducks in a row in any given day or month, I get discouraged. Like I am not disciplined to exercise like is recommended, I don't always eat right, I not always faithfull to my spiritual practices ie. yoga and meditation because I can't sit, still or my mind doesn't allow me to relax blah, blah, blah. I don'tlike to have to watch the sals either but I can eat almost what I want and still know that the guai working on some level in my body. I know it isn't a magic pill and I will always be trying to feel better and I like to think that the guai is like a little army of workers helping my body to be all it can be. Remember the analogy of pac men eating all the nasty cancer cells when someone is healing cancer. well I try to think of the guai as little pac men eating the phosphates and helping my body to heal. For me after 4 months of being on guai and hearing all the pros and cons I'm still enough of a believer in the concept what if it is true and all we have to do is be patient, and if I give up now I may lose something ie. the next 30 some years, not sure how long I'll live. Quality of life goes quickly when we get older if we don't try to stay as healthy as we can. I think I'm trying to say that I hear your frustration with guai and I admire your commitment to feeling better and wanted you to know that I to get discouraged but isn't that life. Love Nancy
    [This Message was Edited on 05/03/2003]
  7. klutzo

    klutzo New Member

    And, Mikie, if the fog had lifted for me like it did for you, I agree, I would be thrilled and that would be all the convincing I'd need!
    My fog is the one symptom that has gotten steadily worse in the last few years.
    My pain has improved dramatically, and my lumps and bumps went away on their own.
    The last time I suddenly had a surge in pain, it turned out to be the Neurotin, not the Guai. This time a 3 day break from Guai proved that once again the increase in pain was not from Guai, but from increasing my weight lifting routine too fast.
    This is the problem with anecdotal evidence. How do you know for sure that your lower need for pain meds is not due to the ABX, for example? I find it hard to believe the Guai is working, even at 2400 mgs., if you have sunscreen on all the time, since 60% of what we put on our skin is absorbed.
    We really do need some studies here, and Dr. St. Amand should not participate in any of them, as his entire reputation is now vested in this, and there is a clear confilict of interest. But, whomever does the studies should be thoroughly versed in the protocol by him, while having no economic stake in the outcome.
    Nancy - I agree with sticking with it for now, just in case it is the correct way to go...dont want to lose all that time.
    [This Message was Edited on 05/03/2003]
  8. Mikie

    Mikie Moderator

    After a while, like two years, one becomes well enough acquainted with ones routine that it is more obvious what is causing pain. The Doxycycline is not related to the FMS pain. It works in other areas of my CFIDS and has no effect on the pain one way or another.

    I do believe, however, that the Klonopin has helped with the pain. All I have to do is stop taking the Guai for a few days and the pain will start with a vengeance in my hips and legs. That is why I believe it works. I have done this in the past when I needed to use a short-term treatment which I know totally blocks the Guai.

    Now that I am doing so well on the Guai, I don't stop taking it even when I'm using something with sals. I have to put Mederma ointment on my incisions and under my eyes. It is made from onions. This time, I am continuing the Guai and just letting the sals and the Guai duke it out in my kidneys. I believe that either my body is learning to give priority to the phosphates or that the Guai is at least working part of the time. I can tell a difference but am not in gross pain.

    I am working out my lower body too. It is getting stronger all the time. I can now get up from the floor without leaning on something. I can start using my upper body tomorrow. and look forward to getting back to stomach and upper body workouts.

    You are right about knowing what works when one is on several treatments. I have found that they all work synergystically and the total effect is greater than the sum of the parts. This is good news for us. There are no silver bullets, and the Guai is no exception.

    I do believe in the mind/body/spirit connection and I can't help but think that being obsessed with the results from any treatment is counterproductive to its efficacy. This will produce stress which just might make the treatment ineffective. As I have said before, sometimes we just have to take a leap of faith.

    Love, Mikie
  9. klutzo

    klutzo New Member

    I think you are right about the spiritual side. Obsessing over a problem can be worse than the problem itself!
    I hope you will check out my post about Metabolism. When I read that description of hereditary functional adrenal insufficiency on the Dr. Rind website, I had one of those "lightbulb moments" since the description of how one gets this was so fitted to how I feel about it.
    I had already been told many yrs. ago by a Naturopath that I was in end-stage adrenal failure, but I chose to believe the Endocrinologist instead. Now I see by the table on Dr. Rind's site that I have advanced even farther into adrenal collapse. It explains everything that is happening to me, including the temper tantrums.
    I will keep taking the Guai, but I will go after this adrenal problem with a vengeance!
  10. Mikie

    Mikie Moderator

    I couldn't find a list of the ingredients on the products sold at this website. Do they contain sals?

    Please do keep us informed about how you are doing on this treatment.

    Love, Mikie
  11. klutzo

    klutzo New Member

    Don't know about the sals and was concerned....would have to call them I guess. What I will do is research the supps. they recommend that I am not presently taking, like Proline, and look until I find a site that does list ingredients, and buy from that site!
    P.S. I just looked and Proline is an amino acid. I do not believe taking individual aminos is safe for any longer than 8 wks. at a time, and apparently neither do many vitamin manufacturers because I have not found it sold individually yet. The only other recommended item that I am not already taking is the gland extract, which I am afraid of due to possible contamination by parasites. Also, many gland extracts have nothing in them....they are just 100% fradulent. I took thymic extract once to boost my immunity, at the behest of my Naturopath, but that was before I had researched them and found out the potential bad news.
    I think for me the important "light bulb" moment was in reading Dr. Poesnecker's explanation of how we get this and realizing that I have a RIGHT to do what I need to do to be well, even if others think it's strange or abnormal that I need so much quiet, rest, time alone, etc.
    [This Message was Edited on 05/04/2003]
  12. Mikie

    Mikie Moderator

    This is often one of the most difficult things when we live with other people. They just do not understand our need for rest and sleep. It's very hard on relationships. We have to make our stand and insist that we get what we need without guilt. Guilt produces stress which just increases our need for sleep.

    Love, Mikie
  13. Tibbiecow

    Tibbiecow New Member

    I am so sorry that you are so frustrated with the guai. I am really glad to hear that you are sticking with it. It takes the intestinal fortitude that the majority of people just don't have to see this through. Today's culture wants results RIGHT NOW, not in 6 months. I think you would have been better off having expert help in determining your exact dose, and getting mapped to see your progress and make sure you are not being blocked, and have the encouragement of a medical team that has been through this with many patients. I wish that I had oodles of money and I could just buy you a plane ticket so you could come see my doctor. But if you have to do it on your own, I am here to give you all of the help I can. (By the way, his nurse is recording the progress of EVERY guai patient at every visit which at some point will all be put together in a non-St. Amand study.)
    I think that the important things to remember are, 1) be ultra vigilant in your efforts not to block the guai. Look up in the archives Hayley's story, it is called something like "two year progress report, (sort of)" for inspiration. 2)the healing from guai does not happen overnight, it can just creep up on you and you realize that you can do more and feel better after a few months 3)our bodies often have other things to deal with that guai just does not cover, it is important, I am SURE you know this, not to blame every new ache or pain on fibro, and have it checked out.
  14. klutzo

    klutzo New Member

    Thanks for the pep talk (again). I am back on it now for 2 days at 1800, hoping I will cycle here and not have to go to 2400 again, because that pain was so bad. I'm being careful not to change my weight training routine at all now, since I could not tell without stopping Guai which was causing the extra pain.
    I will check out Hayley's archive...thanks for the tip.
    P.S. On the way to church this morning, we went by a very upscale home and were amuzed to see that they had added lifesize statues of a cow and a calf to their front yard! I thought of you and your Tibbie story immediately. :)
  15. Mikie

    Mikie Moderator

    There are some cases where the patient never had a Guai flare but simply started to improve. Perhaps if you cut back for a period of time rather than just a few days, it will give you an indication of where you are in the process. Cycling doesn't mean lots of pain most of the time. Lots of pain most of the time is usually indicative of too large a dose.

    Love, Mikie
  16. Tibbiecow

    Tibbiecow New Member

    Cow in OUR yard means two things. 1) I won't have to mow the lawn for a while and 2) I either left the gate open or I have to fix the fence !!!
  17. I too was skeptical of the guai but found it really does help , but takes time. I have taken it for a couple yrs now. I didn't take it a couple times, too lazy or forgot and like Mikie I paid for it, I would get alot more pain in my legs, hip area. So I keep it in a couple different places just in case I get too lazy to go take it. Hang in there!! So far, I think its the best thing we fibro folks have to use!!