GUAI frustrations

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Jan 16, 2003.

  1. klutzo

    klutzo New Member

    I finally recieved my copy of Dr. St. Amand's book today, after being on the Guai for almost 2 wks. This is a warning to anyone considering trying the Guai to please WAIT until you read the book before starting the Guai and don't do what I did. I thought I had found out enough by asking questions of people here who use Guai, but I was wrong. I have already gotten far enough into the book to find out that: 1) ALL women's razors have aloe strips now, even if they don't say so. I went and looked, and sure enough there was a thin little green strip there, 2) the pink kids toothpastes are not Ok like I thought, because they have the word "flavor", which almost always means mint. So, I have two useless tubes of Scooby Doo toothpaste, and I have to start all over using baking soda and salt mixture to brush with. I had just upped my Guai dose to 1,800 mgs. today since I was getting no flare-up, but now I know why. I intend to stay up most of the night reading because I don't want to waste any more medicine without having the full picture, so I can make a 110% effort to do it correctly. I also found out why I am not losing any more weight on my low-carb diet. It turns out I am on the maintenence diet, not the weight loss one. The weight loss one takes away my favorite source of protein (milk, cheese and yogurt), so I don't know how I'll ever stick to it, but I must try.
    What a bummer.
    Klutzo
    [This Message was Edited on 01/16/2003]
  2. oregoncoyote

    oregoncoyote New Member

    I read the book and did all it said including massive does of Guai for over a year and it did me absolutely no good. If you really do the research, you realize that it is virtually impossible to stay away from salicilates unless maybe you move to a different planet. You cannot get one speck of soil on your skin because it may contain these and that is only the beginning. I could go on and on. You have just begun to run into the frustrations. I wish you luck but wanted you to know my experiences. oregoncoyote
  3. seaview

    seaview New Member

    and I promise you Klutzo that you will read it over and over again! Please do not get discouraged.....just figure out what you need to change and do it. Not all razors have the aloe strips...you just have to read the package. I really encourage you to go to either Dr.St.Amands site or Tesa's(which I believe you can link to from his) and check out the ok product list. Just so much easier on these already overtaxed brains. I have been in a really bad flare since going to 1800. I also am having major marriage problems also so the pain could be combo of both. Please know that I am thinking of you as I have a list here of who is trying the guai. Since we have some people like Darlyn Starland and our own Mickie who state it works I am going to give it all I have. They tried all those other awful drugs on me and nothing worked so I feel I dont have a lot of options. Our Pain management doctor where I am doesnt believe in FM so I am pretty much on my own. My doctor is watching and waiting to see what happens. So dear one, now you know why Mickie kept saying to read the book....it is a necessity with this protocol. I still keep it next to my bed just to read the positive statements in it. Thats how bad I feel! I am with you on this one....you might want to start back with a lower dose just in case..Let me know how you are doing........Kathleen
  4. Sky

    Sky New Member

    I read the book thru 3 times before starting the protocol 20 months ago. I also spent a month going through all of my products. This protocol is NOT easy by far, but if done properly, the results are worth it. I have had amazing results on guaifenesin.

    There are razors that you can use. Not all of them have aloe in that strip. Try one of these: Schick Slim Twin Razor ST Sensitive w/Vitamin E (Green), Lanolin (Blue). I use the green one.

    As seaview stated, I would cut back on your dose and start again. Or stop the protocol completely until you have read the book thru a couple of times.

    Good luck to you,
    Sky

    Almost forgot about the toothpaste... there is one Blue's Clues that you can use. Just check the ingredients. Just because it has flavor, doesn't mean it's mint. There are bubble gum ones that are okay to use - I think Barbie is on the tube of that one that is okay. Sorry, I don't remember the brand names. I could check for you when I get home.
    [This Message was Edited on 01/17/2003]
  5. Mikie

    Mikie Moderator

    Sweetie, don't give up. All of us are different and many of us can tolerate a few sals; however, I believe it is best to try to completely eliminate them in the beginning at least. FYI, if you do get some sals, it will only block the Guai for 24 hrs.

    There are razors which do not contain the Aloe. I have been using an epilator for years. The new ones are not nearly as painful as the original EpiLady. I use the EmJoi unit. I've been doing this for soooo long that it isn't painful at all for me. Eventually, the hair gets very silky and soft and lighter in color. Eventually, a lot of the hair simply quits growing back in. Once you start, you can use it every week and only have to pull out a few hairs. I also use the unit under my arms and on my bikini line. It has a gentle speed. It's not everyone's cup 'o tea, but it's great for me.

    I use the Blues Clues blueberry and Barbie bubblegum toothpastes. I chew cinnamon gum to freshen my breath. Usually when something states, "flavor," it's synthetic flavor. Kathleen has good advice. Go to the sal-free list. Just remember to read labels every time you buy because the formulae change before the websites can update.

    Kathleen, I'm so sorry for the bad Guai flare. I had the worst flares when I went from 1200 to 1800 mgs. a day. I had to actually go back to 1200 for a bit and then try again later. The second time, it was easier for some reason. Then later, I changed and took 1200 mgs. in the morning and 600 mgs. at night. This also caused a flare. I had a horrible flare when I increased to 2400 mgs. a day, but it didn't last as long. I'm stopping here.

    I pray for all you guys who are going through the difficult first few months, adjusting your doses and products. I promise, things will settle down eventually and if it works as well for you as it has for Sky and for me, it will all have been worth it. It can just be a little frustrating at first.

    I still reread the book and still find things I missed originally. It is one of the best books for FMS regardless of whether one tries the Guai. I know I sound like a broken record when I tell everyone to read the book, but I honestly feel that it helps smooth the path once one starts the treatment. Good luck.

    Love, Mikie
  6. klutzo

    klutzo New Member

    I just spent 1 1/2 hrs. online getting the 800 numbers to call cosmetic companies, since none of my makeup was reviewed on the Guaidoc site, except my cover stick. The Maybelline site froze my screen, twice, causing me to have to shut down, so I guess I can't ask them anything. Luckily, I found out my liquid makeup is OK,and will go and put it on the Guaidoc site for everyone. I also called Johnson and Johnson and found out that the flavor in my Scooby Doo toothpaste is Ok too. I don't want to buy lots of new stuff if I don't have too, esp. since I wear makeup only on special occassions, so I've got lots left over. I went to the drugstore with a list of all that I use and all of my eye makeup checks out OK, but none of the blusher. I was trying to call Maybelline about lipsticks since none of them have ingredients on the container.
    Oregon, all my gut instincts agree with you, but I was drowning in depression until I decided to try some things I had not tried. I have tried everything except Guai, antibiotics and heavy metal testing. Of the three, I felt Guai was the most likely to be valid, and the least likely to harm me. I have to do something, because I am not someone who can just accept this as a life sentence. I will not give it years. I will give it a few months with 100% compliance, and then drop it if I get no results.
    Mikie- I am going farther than you in making sure my soaps, shampoos, etc. are all sal-free so any failure can't be blamed on me. I am wearing gloves when watering my plants, just in case I brush a leaf aside when watering. I am going the extra mile here. I have a question for you though. You've said your FMS is 3/4 reversed, but your CFS is still causing a lot of fatigue. I have gotten far enough in St. Amand's book to know that he says that CFS is just FMS in a person with a high pain tolerance. He insists in the book that the two are the same and will clear up with Guai.
    He says emphatically that ALL of our problems will clear up with Guai, unless we have untreated hypoglycemia. He makes it pretty clear he does not believe all the autoimmune, infection, neurotransmitter stuff means anything, only the phosphates blocking ATP formation. I am confused as to why you think your FMS is 3/4 reversed, but your CFS is not, when he says they are the same. What say you?
    Klutzo
    [This Message was Edited on 01/17/2003]
  7. Mikie

    Mikie Moderator

    The reason I believe that my CFIDS is separate is because I have chronic mycoplasma infection which will continue to make me sick regardless of what else I do until the mycoplasmas are killed off. Dr. St. Amand isn't taking into account that other conditions in the body can produce CFIDS. I believe he is wrong when he theorizes that the phosphate debris is the ONLY thing which produces FMS/CFIDS.

    I believe I am about 3/4 reversed in my FMS because my tender points are about 3/4 less tender and my pain is about 1/4 of what it used to be before I started the Guai.

    When I try to cycle off the Doxycycline for the mycoplasma infection, my IBS, chronic sore throat, migraine-type headaches, and swollen lymph nodes return. This, despite the progress the Guai has produced in my FMS symptoms.

    Finally, you have to give the Guai treatment a lot more than just a few months to judge whether or not it is effective. Besides making a few changes in personal care items and supplements, which you will get used to, what have you got to lose by staying on the Guai treatment for six months or even a year? You'll be no worse off and probably better off because the Guai will help with blood circulation in your body, a problem for us. If after a few weeks, there is no cycling, it's time to increase the dose. At some point, the Guai should cause a Guai flare indicating that the proper dose has been reached.

    I did hear from one woman who was quite reversed who never had a Guai flare. She just started to feel better on it. We are all different. Anyone who tries it and never flares or feels better and stays on the same dose isn't following the protocol. One should either flare and/or feel better. If one fails to do either, the dose is wrong. Be patient with this. Use mental visualization, imagining the Guai guiding the offending phosphate debris into the tubules of the kidneys and out into the toilet. Speaking of which, be alert to your urine. It should produce a "Guai" smell and eventually it should produce what looks like talcum powder floating on the top or crystals lying on the bottom of the bowl if not flushed.

    Love, Mikie
  8. klutzo

    klutzo New Member

    Lots of MONEY that my husband earns by breaking his body every day. I have now finished the book, and the person in there who took the longest to notice anything took about 3 months. I will go up higher on the dose if needed to produce a result so I know it's real (at this point I am still not a believer). I have tried too many sure things, and wasted too much money, and I feel guilty. I will give this a fair trial, but I will not pour good money after bad, esp. when I did not earn it.
    BTW, I forgot my reading glasses when I went to the store today armed with a list of OK makeup from the guaidoc site. It was a big mistake, as the only available powder on the list turned out to have Sunflower seed oil in it when I got it home where I could read it. Everyone should be warned that lists are no substitute for reading labels, and since lipsticks contain no ingredient labels, they will never be safe.
    Klutzo
  9. seaview

    seaview New Member

    I apoligize for being so quick to just say go to the site ans go off the list to purchase your items. I was wrong. Yes, we must check the labels. I don't wear any make-up...well, lets just say I ran out and havent restocked....no biggie to me. I will put some mascara on if I look too tired. Please hang in there. I understand about the $ thing because I do not work also but for what we have spent on other meds and alternative treatments this is by far the least expensive. Do try to think of what your body is going through as it lets go of the phosphates and those muscles can get back to feeling right. I am thinking of you my friend ........Kathleen
  10. klutzo

    klutzo New Member

    I will give the Guai a fair try, following the time schedule in the book for increasing doses. After reading the book, his theory makes a lot more sense to me than it did before. He brought up some things that I have going on that I have never seen anything written about....like burning tears. I have this problem so bad that it has burned off the eyelashes at the corners of my eyes.
    What Mikie said made me sad...although I am not officially dx'd with CFS, I meet the new criteria for it, and I don't want to go through all this and still be too sick to work. But, I guess it is still worth it if it prevents my OA from getting worse. Dr. Amand says that OA is the eventual result of untreated FMS, and I just developed a bone spur in the exact spot of my spine where my FMS began. It hurts like he**, in spite of lots of PT and Glucosamine, so if I can prevent getting more of the same, the Guai will be worth it.
    I didn't used to care about makeup either, but then I got Rosacea (runs in my mom's family). Without makeup, I look like an alcoholic, but I don't touch the stuff! I also look so tired that total strangers come up and ask if I'm all right. I have decided not to worry about the makeup. I only wear it about once every two months for a few hrs. when we go out to dinner with friends, and as Mikie pointed out, it only blocks the Guai for 24 hrs. I can handle a 24 hr. delay in my recovery, after 17 yrs. of misery.
    Thanks for the kind words, and I'm glad the Guai is helping you so much,
    Klutzo
  11. Mikie

    Mikie Moderator

    I'm very sorry if what I said upset you as you do sound very upset.

    Yes, if the treatment is a bust for you, you will have lost some money. I have the feeling that a lot of old baggage dealing with dashed hopes is coloring your approach to the Guai treatment and causing you a lot of anxiety and stress. I believe that going into any treatment with the idea that it probably won't work is a recipe for disaster. I know this probably is not what you want to hear and I am not trying to upset you further, but I do believe all this anger and stress may interfere with the Guai's work.

    No matter what else we do, if we do not eliminate stress in our lives, nothing will heal us. Please try some kind of relaxation treatment, such as Yoga, meditation, or Tai Chi, or utilize some therapy to help reduce stress. I pray that you find some peace of mind and that the Guai does help you.

    In practical areas, I have found that in retail stores with large cosmetic displays, like Eckerd's Drugs and Walgreens, there are often little pads with tear-off sheets which contain the ingredients in lipsticks. I have also gone to their reading glasses display to use a pair when I have had trouble reading the small print.

    In my case, I am very thankful that the Guai is reversing the FMS symptoms even if I do have to rely on another treatment for the CIFDS. If I were still trying to contend with all the fog, pain and stiffness of the FMS, I wouldn't be able to pursue my healing as I am doing. I believe the Guai is doing at least half the total healing I am experiencing and that's a lot. One of the best, and most unexpected benefits, is that the symptoms of the osteoarthritis, with which I've been diagnosed, is gone. That's another HUGE benefit I would not have without the Guai treatment. I have learned to be thankful for whatever healing I get.

    I admire all that you are going through to try to eliminate all the sals in order for the Guai to have every chance of working. If you can eliminate some of the stress and anxiety, it will help the Guai as well. Stress and anxiety are at least as harmful as the sals, if not more so. Good luck.

    Love, Mikie

  12. klutzo

    klutzo New Member

    I know I have posted that I had started taking Neurontin to tone down the "overreacting to everything syndrome" that I've had ever since going through menopause. I am not at an effective dose yet, so I am still over-reacting to all my own feelings and everyone elses'.
    I have meditated daily since the age of 17, but it does not help with this.....the overstimulation has become so severe that if I am in a crowded, noisy restaurant, my blood pressure goes up so high that blood runs from my nose right at the table. It's very embarrassing and very dangerous. It happens so fast I have no time to even think about doing yoga breathing exercises or anything else. Even taking xanax in advance does not prevent it. I hope I can find a solution other than becoming a total hermit.
    Hugs,
    Klutzo
  13. Mikie

    Mikie Moderator

    I hope the Neurontin helps. I know exactly what you are talking about. I have had to leave a buggy in a store and get out of there as fast as my feet will carry me due to sensory overload.

    I don't know how the Neurontin is taken, but I put 1/4 of a Klonopin tablet under my tongue, sometimes before even leaving the house, if I'm going to be where there are children, noise, and offensive lighting. It really helps me with the overload and overreacting.

    Believe me, Sweetie, I understand. It's just part of what ails us. On the positive side, though, the combo of taking the Guai, the Klonopin, and the antibiotics seems to be working, at least most of the time. Right now, I am in a fatigue funk. I'm seeing my doc tomorrow. He probably won't have much to offer, but I think it's important to document this for my records for SSD.

    Love, Mikie