To Hayley or Mikie or others about Guai

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Apr 13, 2003.

  1. klutzo

    klutzo New Member

    Please see my post about the things you said about blockers for Guai under the "Guai, good bad, or?" post by Noah. Can you answer any of these questions for me?
    Thanks for reading it,
    Klutzo
    [This Message was Edited on 04/13/2003]

    Please see additional questions below. thanks![This Message was Edited on 04/18/2003]
  2. Tibbiecow

    Tibbiecow New Member

    Hope I can help. Posted under Guai, good, bad, or ?
    [This Message was Edited on 04/13/2003]
  3. TNhayley

    TNhayley New Member

    Sorry .. I've been away from computer. I can only get here every couple days. I just posted under Guai good or bad. Let me know if you have any moer questions! :) Hugs,
    Hayley
  4. klutzo

    klutzo New Member

    I just posted two more under "Guai good and bad" with questions about:
    1. Is it OK to sniff Vicks Vaporub as long as you don't touch it or swallow it in the form of coughdrops, or syrup?
    and,
    2. Do people who have to take higher doses to reverse take longer to reverse than those at low doses, and if so, why?

    That's basically what I asked, but I also put in some stuff about gardening.
    Thanks a bunch!
    Klutzo
  5. klutzo

    klutzo New Member

    Looking for answers. K
  6. klutzo

    klutzo New Member

    Anyone out there?
  7. Tibbiecow

    Tibbiecow New Member

    I think those who have to take higher doses have less efficient means of eliminating the phosphates from their kidneys. Those at the lowest doses can eliminate some of the phosphates a little bit without help from guai, was my understanding, but I don't have my book right now to reference. So those at the highest doses would have the highest buildups and the least efficient elimination process so it would take the longest for them to completely reverse.
    I think I would stay away from the Vicks, even to smell it. I have had some really bad reactions to things like mothballs, perfumes, etc that gave me migraines that may not be related to the guai BUT I do know that if I put any sals on my body I will get a migraine within 3 hours!If you don't get an answer here I'll try on the guai support group website, I've had reasonable luck there and I can report back to you here but it might take a couple of days.
    Hang in there, Hayley or Mikie will get around to you soon.
    LOve,
    Tibbie
  8. Mikie

    Mikie Moderator

    I would also stay away from the vapors of stuff that is known to block Guai. Mint and menthol are two of the worst offenders.

    I actually discussed this with Claudia. At very low doses and at very high doses, the Guai will work for almost everyone, even when someone isn't getting the Guai flares. It's just that most of them won't stick with the treatment if they don't see some results. We can control the speed with which reversal takes place. I flared at 600 mgs. a day but have steadily increased it to 2400 mgs. in order to speed up my reversal. Being at a higher dose also seems to enable me to tolerate sals a little better. There is a large amount of debris in my urine and it is larger particles than the finer baby powder looking stuff at lower doses. I had this happen back when I went from 1200 to 1800 mgs. It actually collected in the bottom of the bowl and solidified.

    The most important thing she told me was that if you suspect your child might be inclined to FMS, the symptoms can be prevented by giving the child 600 mgs. of Guai a day and having him or her avoid the sals. There will most likely not be any flaring, but prevention will take place.

    Love, Mikie
  9. klutzo

    klutzo New Member

    I guess it will just take as long as it takes. I just hope I live that long, with my high cardiac risk level!
    I promise to stop sniffing the Vicks vapors and put up with my stuffed up nose.
    Thanks for the info,
    Klutzo
  10. Tibbiecow

    Tibbiecow New Member

    I already got an email from Gretchen, an administrator of the guaigroup that sniffing the vaporub is ok if you don't touch it.
    If you start to feel better like your reversal flare is gone, I would suspect that maybe the sniffing might be blocking the guai and the helpful email is wrong. Listen to your own body. If you can sniff it and still feel your reversal, you're OK.
    Another person sent back that he had been two years on guai. He was going to use Vaporub when he had a bad cold and even if it did block him, so what for a few days, after two years a couple of days backslide he could make up. But I would say you're probably not to that point yet!
    I'll report any other emails that I get.
    Happy sniffing,
    Tibbie
  11. Mikie

    Mikie Moderator

    I am about 3/4 reversed, so I figure I can afford to let the Guai be blocked if i really need something that blocks it. If I do this for more than a couple of days, though, I get pains from hell in my legs.

    Using something once blocks the Guai for 24 hours, so it's no big deal.

    I am wondering whether, now that I am up to 2400 mgs. a day, I will have to continue at this level when I am completely reversed or whether I can lower the dose. Guess I'll just have to try it.

    Love, Mikie
  12. TNhayley

    TNhayley New Member

    Klutzo, it looks like Mikie and Tibbie have answered your questions. I just wanted to add ... I think it's good in a way to know what blocking feels like. It's a hard thing to learn, IMHO. But, if you get into the guai groove and are doing well ... knowing what blocking feels like can help you identify blockers when you run into a problem later on (as we all invariably seem to do). Here is the blocking test from one of the admin team on the GuaiGroup:


    1. Increase your dosage by 300mg or 600 mg. for a few days;
    2. If the increase in dosage causes an increase in any of your symptoms or an increase in your cycle frequency, you are not blocked;
    3. If however you DON'T experience any increase in symptoms or cycle frequency you may be blocked, or you may have reached your kidney's capacity
    for elimination;
    4. To ascertain which is the case, stop using any non-essential products and check all your products for salicylates.
    5. If you experienced change when you eliminated products then you were blocking - if it didn't change then it's likely you were not blocking and have probably reached your kidney's capacity for purging;
    6. If you were blocking you can continue using any products which were confirmed as Salicylate Free & go back to your previous dose - Discontinue using any of your other products which cannot be confirmed as completely Salicylate Free and continue focusing on your experience;
    7. Don't add any product to your daily regimen unless it can be ruled salicylate free..

    NOTE****For those on the higher doses the blocking test isn't as definitive and will require a longer test period and any changes will be subtle.

    Mikie, from what I understand, once you are reversed ... you simply maintain at your cycling dose. This is why it's important to find your cycling dose. Another good reason to know your cycling dose is that if you have family with FMS, they require similiar dosing ... this to me seems especially important to know if we have children on guai ... or who are going to start guai. Also, what has Claudia said to you about going higher than your cycling dose? Just curious.

    Hugs,
    Hayley
  13. klutzo

    klutzo New Member

    Your description of how to check for blocking is pretty much the same logical procedure I figured out on my own to test if the Guai was actually working, or if I was just having a Fibro flare. Obviously, if I raise the Guai dose and get worse, it is not just a fibro flare. I intend to do it again though, since I am very skeptical and need lots of evidence to convince me.
    Thanks for the post.
    Happy easter to all!
    Klutzo
  14. Mikie

    Mikie Moderator

    Claudia said that once one has discovered the appropriate dose, one can increase that dose to speed up the reversal. Then, if one is flaring too much at a higher dose, one can decrease it to slow things down.

    Both my daughters flared at the same dose that I did, the basic 600 mgs. a day. If a child is given Guai before the onset of symptoms as a preventive measure, the child will not have a flare. If the child does flare, that means the illness has already started in the child's system.

    Love, Mikie
  15. TNhayley

    TNhayley New Member

    Hi Klutzo and Mikie...

    Klutzo, I'm of the same mindset that I too need *proof*. I started guai as soon as I was DX'd because my Mom had already tried so many things and was bedridden ... getting Meals on Wheels ... and guai was the thing that got her back into life. I was probably 95% better when I decided to try acupuncture and herbs ... what I considered a more natural approach. I learned lots of lessons from doing that. One was don't monkey around with what works ... and guai definitely helped me. Another thing was that anything we put into our bodies, even if it is *natural* still acts as a drug. I learned a lot about nutrition during that time, too.

    The herbs were far more potent than I ever imagined they would be. Looking back, I may have been herxing ... because I felt so awful. I did lose some weight which was something I hadn't been able to do before. But it was scary to me ... especially when I didn't know exactly what I was taking (he mixed up these complicated concoctions of roots and herbs and barks)... and even this Doctor of Chinese Medicine couldn't explain to me exactly *why or how* these herbs worked in any Western or scientific sense ... other than 1000's of years of use (his proof) and that they worked on my Damp Heat (or other Eastern terms like Chi). I guess it was just too vague for my Western mind, even though I feel like it's an open one. I do have to say that the acupuncturist was a very kind healer and his true compassion was valuable to me. I haven't ever felt that from any allopathic doctor.

    Anyway, it physically set me back overall. Looking back, I wonder if it is the natural progression of this DD (even though they say it isn't progressive), quiting guai, or if the herbs stirred up something ... I just don't know. I guess I got the proof I needed, but it was a hard lesson learned, and really I still don't know exactly what happened. I do think my faith in guai was reaffirmed. Sorry .. got kinda longwinded here. :)

    Mikie ... thanks for your responses. I'm glad to know you are in touch with Claudia. One reason I'm here is that I've found so many people trying guai without help, failing and saying it just doesn't work for them. I think with the proper support it works for many people. More and more docs are willing to RX guai ... but they don't know or follow the protocol, start people out at way too high a dose and/or don't tell their patients about sals. With so much misinformation about it ... I want to help those who are struggling. OK, gotta run. Happy Holiday to all.

    Hugs ... Hayley
  16. Mikie

    Mikie Moderator

    People get sick of hearing me tell them to read the book as many times as it takes to truly understand the theory, the protocol, the importance of eliminating the sals, the importance of getting the dose just right, the importance of diet, and having patience.

    Most docs have no clue as to this treatment and we cannot depend on them for anything other than writing the prescription. We have to take control over every aspect of this treatment. I don't think that's a bad idea in all areas of our treatments. It's very empowering.

    Thanks so much for all the info you provide. Like you, I wish more people would give the Guai a good try. Too many have failed because they gave up too soon, didn't eliminate the sals, or never reached their appropriate dose.

    Love, Mikie
  17. Tibbiecow

    Tibbiecow New Member

    Without spreading misinformation. Had a gal from my mother's church referred to me about guai. Had aloooong telephone chat about it, what to expect, sals, the feeling worse before better, everything. She had an appointment with her GP who was treating her fibro the next day. Called her a week later, she said, oh, yeah, taking the guai and feeling much better! Oh well...
    Tibbie