To Mikie about Guai dose

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

  1. klutzo

    klutzo New Member

    Well, Mikie, I have jumped into the deep end of the pool, head first!
    I ordered my Guai from the online drugstore I use, several days before ProHealth announced they were carrying it. But, I notice their dose is 600 mgs., just like the one I got.
    I had an unpleasant experience with opening a capsule of Neurontin to take half of it recently. Even though the pharmacist told me it was safe to do, it destroyed my stomach for the next two days. Now that I am swallowing the whole capsule, I have no stomach touble with Neurontin.
    So, when I read the warnings on my Guai package, and it said "do not crush, chew or break tablet", I decided to go with what I hope will be the lesser of two evils, and take the whole 600 mgs. with a full glass of H20, like it said to. I hope I don't have the Herx from he**!
    Did you break tablets in half in the beginning? Do you think I should only take one of the tablets daily for the first few days? (It took several days for Claudia to answer my e-mail, so I can't ask her or it would be too late).
    I promise I will not hold you responsible for the results of what you tell me. As you know, I am still a skeptic, and am not really expecting any reaction at all, at any dose, but if I end up the fool, I'll be the first to admit it to you. :)
    Thanks for any advice,
    Klutzo
  2. Hippo

    Hippo New Member

    I started Guai in November. I cut the tablets in half and took half in the morning and half at night for the first week, and then went to a full tablet in the morning and a full one at night. That is what I was instructed to do, and it went fine.

    HIppo
  3. klutzo

    klutzo New Member

    Thanks for info! What dose are you up to now, and have you had the Herx yet to determine your premanent dose?
    KLutzo
  4. Hippo

    Hippo New Member

    At the risk of having you laugh at me, I had somebody who does muscle testing determine that my dose is 1200 mg per day. I have the dose checked once a month. I know, not very scientific, but my energy is limited and my money is limited. I have a pretty bad chronic cough, and I think the Guai is helping with that. So the guai is probably worth it for that alone. I am just going to continue with this dose and see what happens.

    Hippo
  5. klutzo

    klutzo New Member

    I am very familiar with muscle testing, since most naturopath's use it. I am not convinced it works, but I am totally open to the possibility and the theory behind it.
    BTW, I have aleady had a good thing happen with only one 600 mg. dose of Guai!
    I used to sing, but FMS has robbed me of my breath control and taken several notes off my range. I do 30 mins. on a treadmill daily, and play favorite music and sing along to make sure I am not working too hard, and to distract me from the pain. Only my dogs want to hear me sing now....thank goodness they love me anyway! But, this morning I was astonished to find that I sounded pretty darn good again! Several high notes that I had not been able to hit for years were back and I could hold notes again. So, thinnning out the mucus must have helped!
    Klutzo
  6. seaview

    seaview New Member

    I broke in half and also had no problems. I am currently at 1800 mg a day. I think that is my dose since my symptoms have worsened. What does Herx mean? I keep trying to figure it our but I am at a loss. I wish you the best as you embark on this journey. I am my doctors test patient so we will see what happens. I am being very careful about the Sal thing which really wasnt that hard to do. Keep us posted on your progress as I will also.
    Blessings,Kathleen
  7. Hippo

    Hippo New Member

    I thought the sal thing was kind of hard, I love nice lotions and face creams. I am now washing my face with Ivory soap, not bad, but I do miss my creams.

    Hippo
  8. seaview

    seaview New Member

    I was already using some of their products so it made it easy. My sister who thinks I do not pamper myself at all had given me a gift basket with lotion,face cleaners and so on. Fortunately they were on the ok list so I am just sticking with them. I haven't bought any makeup yet.I do not wear any usually so not a big deal. With winter here and my face getting paler I may need to get some soon though! Makeup always stops the "gee,you look so tired comments!" Funny how that works. My symptoms have definately increased and I just am coming somewhat back to life after a week of complete pain and fatigue that were over the top. I was able to take a short walk with my youngest two which was a big deal. Much positive success to you both! Kathleen
  9. klutzo

    klutzo New Member

    I know what you mean about makeup.....I was in the grocery store without it once when a little old lady with a cane came over to me and told me that I looked ill and asked if she could help me! I was mortified and swore never to go out of the house without it. That lasted about 2 wks. I simply have more important things to do with my limited energy, and I dislike having to take Benadryl all day while wearing the stuff (even the hypoallergenic kind). I wrote down the names of everything in my makeup kit, took the list to my local drugstore, and read all the box labels to see what I could use. All my eye makeup passed the tests, but none of the other stuff did, and I am not willing to buy all new foundation, powder, blusher and lipsticks until I KNOW for sure that Guai will work for me.....and that brings us to the "Herx".....
    Herxheimer's reaction is named for the scientist who first noticed it, but I can't remember what he was studying at the time. Anyway, you should be having one periodically if you are at a high enough dose of Guai to work, or at least that's how I read the Protocol material at Dr. St. Amand's website. With a Herx you experience a pronounced worsening of symptoms in the reverse order you developed them. For example, my last symptom to develop was severe memory problems, so I would probably feel like I had the flu and be very achy, as well as having the worst memory problems I ever had. Once that cleared, I might get a bit of a rest, followed by the next Herx, which would be the last symptom I developed before memory problems, which in my case would be severe chills that wake me up and keep me awake for hrs. That would get worse, once again accompanied by a flu-like feeling as the crystals pulled out of the injured areas by the Guai, pour into my blood stream and temporarily overwhelm my body with toxcicity. I hope this explains it, but if not, you can search previous posts here, or do a websearch for Herxheimer's reaction, and you should get plenty of info.
    Hugs, Klutzo
    [This Message was Edited on 01/04/2003]
  10. obrnlc

    obrnlc New Member

    what great info on this thread--i never heard of "herx" til i read this! I have settled on 1200mg. (600mg twice daily) as my theraputic dose--i guess it must be right because the pain has become so severe since being on this dose! I notice other very odd symptoms to, including a form of narcolepsy that is recent to me (since the guai--3 months now) both my rheumatol. and physiatrist don't actually know what to tell me to expect, so i am really relying on any info i read here. I have noticed my legs and feet starting to swell somewhat, now i am never sure if it is fibro, treatment related or something else. My pain doc says the reversal probably won't be as i expect it (from what i have read, i expect to be in severe pain up to 10 months (2mo./year of fibro) then to have a gradual fading of symptoms. he says my pain should be lessening already and wants me to try pain psychotherapy(????????) if anyone knows how this works, please let me know! Good luck to you all, laurie
  11. seaview

    seaview New Member

    and I guess I am really HERXING then because my symptoms are definately worse. That is what makes this so hard to explain to our loved ones. Yes, I am hurting worse and yes this is a good thing. No one around me buys that because they hate to see me suffering more. I am wondering how long this first Herx will last? I will post on another thread and see what others have to say.....should be interesting....I also am wondering how many are trying the guai......keep me posted as to how you are doing..... I am very interested :) Thanks again for the explanation...I knew I had seen it before it just wasn't recalling in my brain what it meant.....imagine that.....my brain not recalling something! That was said with a smile~ Blessings,Kathleen
    [This Message was Edited on 01/04/2003]
  12. Mikie

    Mikie Moderator

    Sorry to be so long in answering your post. I'm in a Guai flare myslef from increasing to 2400 mgs. a day from 1800. Dr. St. A says that the Guai is the exception to the "do not break or cut" rule. I did it for a long time when I was on 600 mgs a day with no problems. Be sure to drink a lot of fluid as the Guai treatment puts extra workload on the kidneys and the phosphate debris crystals can irritate the urethra.

    Technically speaking, the Guai flare is not a Herx Effect. I think I posted this somewhere else, but will repost here. The Herx effect is caused by killing off pathogens which become toxic to the system when they decompose in the body before they can be excreted.

    The pain from taking the Guai is caused by the pulling out of the phosphate crystals from the body's soft tissues. They are pulled out at a much faster rate that they were stored there in the first place. Since they are in crystal form, it is like pulling tiny barbs or fish hooks through the already tender tissues. When starting the Guai treatment or increasing the dose, it usually gets worse before it gets better. A large majority flare at the 600 mgs per day dose, but some require more. Even without a flare, the Guai is working, though at a slow rate. The ideal dose is the one which causes one to flare.

    My steady increases are voluntary in order to speed things up. Patience is not my forte. Also, there are a few sals in the Obagi skin care products, so I figure the extra dose is needed. I can tolerate a few sals, but not too many. Everyone is different in his or her tolerance to the sals. Some can tolerate none. I did have to discontinue the Obagi toner as it contains too many sals, but the rest of the products contain little or no sals.

    Good luck to you and keep us updated on your progress. I know there are at least 5 or 6 of us currently on the Guai protocol and we can be a great asset to one another.

    Love, Mikie
  13. klutzo

    klutzo New Member

    I have taken three doses now at 600mgs. each, or 1200 mgs. per day. I kept the tabs whole ,since my drugstore told me that some types of Guai can be broken, but mine can't. So far, I don't have any symptoms, except the improvement in my singing.
    How long does it take for a Guai flare to happen once you start taking it?
    Thanks, Klutzo
  14. Mikie

    Mikie Moderator

    Like everything else, it varies from person to person. As it is, you are going 12 hours on and 12 hours off the Guai. That is why most people cut the tablets. Ask if you can take Guaifenex LA; it can be cut.

    Taking the Guai once a day may not produce a flare. If you must take it only once daily, take it in the morning so it can be working every time you urinate.

    If you simply don't flare within two weeks, ask the doc if you can start taking one tablet in the morning and another in the evening for a total of 1200 mgs., or change to a tablet you can cut in half.

    It's trial and error and it's hard to make any serious mistakes, so just be patient until you can get your dose just right. You are in my prayers and thoughts.

    Love, Mikie
  15. klutzo

    klutzo New Member


    I am taking the Guai twice per day. I take 600 mgs. in the am. and 600 mgs. in the pm. So, no need to worry that I'm not covered. The worry is that if 300 mgs. was my effective dose, I would have an unbearable flare, right? Does how long you've been sick have anything to do with what your effective dose will be? If so, I'll need the maximum, and I really can't afford that much, though I'll be saving a bundle on vitamins, since I can only take the cheapies without natural E, gingko, bioflavonoids, etc. that I normally take.
    Hugs, Klutzo
    [This Message was Edited on 01/05/2003]
  16. Mikie

    Mikie Moderator

    I don't believe that how long one has had FMS determines the ideal dose; however, the dose will determine the length of time it takes to reverse the symptoms.

    My guess is that if you are on 1200 mgs of Guai, you will notice something withing two weeks. If not, look for any hidden sals and if you cannot find any, take another 600 mgs. in the morning only. This works pretty well. When I went from taking 900 mgs twice a day to taking 1200 in the morning and 600 in the evening, it was like taking an increase and I had a Guai flare. This is because most of the Guai's work is done during the daytime, as I mentioned above. I'm sorry I misread your post. The overwhelming majority will flare at 1200 mgs.

    These flares can be quite painful as is the one I'm going through now, but in the long run, it is worth it. And, I do mean long run. It can take a few months to see any positive results. That's why I always tell people that this treatment requires patience. The positive results can be quite short lived in the beginning. One positive result I noticed almost immediately was great improvement in my Fibro Fog. My CFS still leaves me with cognitive/memory problems, but I don't feel as though I'm walking around in a fog anymore.

    Again, good luck, and bless you for your courage and desire to work so hard to heal. I pray your Guai does good things for you too.

    Love, Mikie
  17. obrnlc

    obrnlc New Member

    hi fellow guai users! Sorry to here about your flare,mikie, glad you are able to get back to the computer! Does upping the dose like that really speed things along? I know it is excruciating, but am ready to do whatever it takes while i am still being prescribed adequate pain meds. i would appreciate any info on how long reversal takes (on adequate dose of guai with history of fms symptoms for aprox 5 years) and when do you finally start to see some good days that are not drug induced? I don't know quite what to expect but think my pain doc might be getting a little impatient with me. how is it going with some of you other users--klutzo,seaview? thank you all so much for your posts-such a boost to our sanity! Klutzo, when you hit the right dose, you will know for sure! Hope it works well for you! Don't you all think the term "herx" is hysterically ironic? What a description--a cross between "hurts" and "hex". Can't get more accurate than that! Good luck everyone--Laurie
  18. Mikie

    Mikie Moderator

    There is a loose rule of thumb for reversal: Once you hit your dose (the lowest dose which produces a flare), it takes 2-3 months for every year you have had FMS for it to reverse. In my case, I have been ill 12 years, so it would take 24-36 months to reverse. I've been on the Guai about 18 months, and I feel as though I am about 3/4 reversed, at least. This puts me at about the 24 month timeline, much shorter than the 36 month timeline. Claudia told me we can adjust our doses anytime in the treatment to speed things up or slow things down depending on our needs. Some people have to lower the dose because they seems to stay in a constant Guai flare without cycling in between. Even if one takes too low of a dose to ever flare noticibly, the Guai is still removing some of the debris. BTW, if any of y'all have kids who have some symptoms and look suspicious for getting FMS, they can take 600 mgs of Guai a day to prevent full-blown FMS. Both my daughters started doing this prior to diagnoses because both my Mom and I have FMS and they had started to develop symptoms. It is helping them. I think the earlier, the better.

    Love, Mikie