a poll about taking Guaifenesin - not just for those taking it

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Dec 22, 2002.

  1. klutzo

    klutzo New Member

    I am reconsidering trying Guai after doing a lot of reading on it. This will be a big sacrifice for me, as I look a lot younger than I am, and will have to let my hair grow out gray if I do the guai. I'll look as old as I am and I'll have two-tone hair for a couple of years.(I am allergic to all but one type of dye, and it has algae in it). I'll also have to give up the only thing that has ever helped my gastritis, ie. Pepto Bismol, and the only thing that has ever helped my peeling skin, ie. Eucerin Plus, among other things. I am an avid gardener,and I understand that I'll have to wear gloves on the guai, in the awful Florida heat, ugh! Before I do all that and more..... I need your help to decide.....

    My question is this:
    If you ARE on the guai, will you tell me some specific improvements you've had from it? What can you do now that you could not do before it, and how do you know it was guai and not something else you tried that did the trick? If you were unable to work, are you able to now?

    If you are NOT on the guai, what was your reasoning for not trying it? Please refer me to anything you want me to read also.

    Thanks to all who take the time to answer me. Hugs,
  2. Mikie

    Mikie Moderator

    I sincerely doubt that using the hair coloring would prevent the Guai from working for you unless you are ultra sensitive to it. I know, I know, we always preach to get rid of all sals, but the truth is that anything which is washed off will usually not stop the Guai for more than 24 hours. Why don't you e-mail Claudia and get her opinion on this.

    I color my hair and give no thought to what's in it. Same with soap and shampoo. What I do watch are supplements and lotions.

    Anyway, on to your questions. You probably already know about what it has done for me, but I'll reiterate here. Two years ago, my pain was so bad that I was on Morphine. Today, I often take nothing for pain and when I do, it's usually something OTC. Since I use an integrated approach, there is no way to prove the Guai alone is responsible for this. However, my improvement started back when the Guai and Morphine were the only things I was using. I just posted an article which theorizes that Klonopin has some pain reducing properties, so adding Klonopin a while back might have helped. I know that my physical therapy flexes and stretches also are helping.

    I also cannot say that the Doxycycline is not helping my pain although I did not notice pain reduction as one of the benefits which the Doxy is producing. I believe my CFS is directly from the chronic mycoplasma infection and until I can get rid of these wee beasties, my fatigue and cognitive problems will not go away.

    If I continue to improve at this rate, I am hoping to return to work this summer. It will have been 2 1/2 years since I was last able to work. I'm not quite strong enough yet to try to work. I'm just hoping that there will not be a relapse which keeps me from being able to work again.

    Love, Mikie

  3. klutzo

    klutzo New Member

    Thanks for the detailed answer. I am so glad you may be able to return to work!

    I went from being unable to walk without help and taking Darvocet 3 X daily to using a treadmill every day and taking only Tylenol, and I did it without guai.
    Don't know about you, but the low carb diet has really helped me as well. I didn't realize how bad I felt before until I went on this, and when I cheated I got sick right away again, proving that carbs were the problem.
    I am about where you are at, it seems....I am just a bit too tired and my neuro problems are a bit too severe, mainly the hypersensitivity and not being able to block stimuli...otherwise I might work part-time. Also, my career requires tons of driving, and talk about over stimulation! I live in the most densly populated county in Florida and traffic is awful here. I have ordered the Neurontin, but have not received it yet due, no doubt, to Xmas mail delays.

    I have very strong nails, and zero tooth tartar...I once went five yrs. without a dental clng. and when I sat down the first thing the hygenist said was that she could tell I get my teeth cleaned regularly cause they look so good! But, I do have those hard lumps they say are from the deposits, in my wrists, from typing with FMS.

    Thanks for the OK on the hair dye...I'm too young to go gray yet!

    I am confused about the CFS...from what I read on two sites I visited, St. Amand says CFS is also caused by the phosphate deposits, so it should be getting better too. I never saw any mention of other problems as possible causes.

    What about gardening? You are in Florida...do you garden? My garden is my sanity. I tried wearing gloves just once...within 10 mins. sweat was running out of my gloves and down my arms...what a mess.
    Still....if it would make me well, I'd give it up.
    [This Message was Edited on 12/23/2002]
  4. Hippo

    Hippo New Member

    I am new to Guai, probably can't help you much, but from what I have read, Mikie is right, you can still color your hair. Also, I believe that Eucerin is on the list of sal-free items so you can still use that. As far as the gardening goes, I believe you MUST wear gloves. As far as why I decided to try it, it's not that hard of a protocol for me. I don't garden, and I am letting my hair go gray because my husband is divorcing me and is trying to claim I can work. The worse I look, the better!! I also don't wear any makeup. I use Eucerin for my hands and it is sal-free. I use Ivory soap, not too crazy about that, but maybe later I can do like Mikie said, anything that you rinse off doesn't matter too much. Good luck.

  5. Shirl

    Shirl New Member

    I am NOT on Guai, because; I am doing so well on my supplements right now. I am a good 80% better than I was a year and a half ago. The ZMA seemed to be my 'missing link', plus drinking water.

    This is my only reason for not trying it.

    Shalom, Shirl
  6. Mikie

    Mikie Moderator

    I'm not 100 percent sure that the hair dye won't slow down the Guai progress temporarily, but Claudia should be able to give you a definitive answer.

    I live in a condo, so the only gardening I do is in posts. I do wear gloves when I'm planting a lot of flowers in the pots, but when I snip some herbs for cooking, I usually just takes my chances. My hands get washed when I was the herbs, so any sals are not on the skin long enough to do much harm.

    Can you use the Aveeno products with oatmeal? They are approved as I guess the oatmeal doesn't block the Guai. Even people with a lot of skin allergies and ezcema can use the Aveeno. I love the shower and bath gel and the bath soak envelopes. The lotion is good too. Lubriderm is another lotion I use.

    Again, some people are soooooo sensitive to sals that any exposure blocks the Guai. I am able to get by with a few without problems. I use sun screen on my face, neck, and chest without prolems. There is a little tea and some carnuba wax in my makeup, but it goes on over my other skin care products and doesn't seem to be a problem. One of the best things I have found for any dry skin areas is Vaseline, the good old greasy stuff. I also use the paraffin spa for my hands and feet. It softens and smoothes the skin.

    Love, Mikie
  7. klutzo

    klutzo New Member

    I re-read Dr. Starlanyl's chapter on Guai last night. In it, she says that one of the reasons Dr. Bennett's study was flawed is that Dr. Amand didn't realize until 3 months before the study ended, that about 85% of FMSers have hypoglycemia, and it must be corrected or no reversal can happen. There is no explanation of why hypoglycemia would interfere with this reversal.
    If 85% of us have hypoglycemia (a figure I readily agree with just from my observations in support group), then how was he reversing all those people for 30 yrs. and claiming a 95% success rate? His success rate should not have been any higher than 15% by his own reasoning!
    Even if you think the only reason for the study being flawed was that the dosage was wrong at 600 mgs. daily, by Dr. Amand's own figures, 70% should have reversed at that dosage.
    If you think the study was flawed because sals were not completely eliminated, how did he reverse all those people before he knew about eliminating all sals, and you still have to deal with the assertions he makes about hypoglycemia preventing reversal. The figures just don't add up...looking for an explanation???
    Just being logical....can't have it both ways!
    Have a Merry Xmas,
  8. pam_d

    pam_d New Member

    I decided I could never take anything I couldn't spell (I'm KIDDING, of course---but no wonder they call it "guai" for short!!) Seriously, I think my "missing links" as Shirl puts it have been discovering severe food allergies I never knew I had, plus drinking tons more water--- cautiously optimistic that I'm showing some improvement. I have read about guai & would not discount taking it in the future. I'm always heartened to hear it's working for Mikie & others, just as the anti-candida protocol works for many of us. I think you should research all you can (which you obviously are doing) and go for it! And please let everyone know your progress. Good luck!

  9. Mikie

    Mikie Moderator

    Food allergies are often linked to Leaky Gut Syndrome. Taking a good probiotic helps with this.

    Love, Mikie
  10. Jmc

    Jmc New Member

    Hi.....I now realise I have had evolving Fibromylagia for perhaps 20 years .... the pain and sleeplessnes and fatigue are now with me constantly. On Aug 14th this year, I had openheart tripe by-pass surgery. Recuperating well, my heart doctor has put me on 321mg of asprin, daily. So now I am on the verge of taking Guifenesin for the Fibro ..... what do I do about taking asprin, a salicyate? I have to keep my blood platelets from becoming stickey. Help!!
  11. Mikie

    Mikie Moderator

    You must talk to your doc. There are other types of meds like ibuprophen which thin the blood. The Guai itself has some blood-thinning properties. I wouldn't start the Guai without first talking with your cardiologist.

    Good luck.

    Love, Mikie
  12. pam_d

    pam_d New Member

    Good point! My allergist already has me doing probiotics---he's really a good FM/CFS allergist, I've never been to an allergist who does such comprehensive testing & treatment----so probiotics, plus dig. enzymes, several things I'm deficient in, found a few things I have too much of (aluminum, mercury---tho not way off charts)---I've been to allergists my whole life, never knew this stuff til now!

    [This Message was Edited on 12/25/2002]
  13. klutzo

    klutzo New Member

    Yes, by all means ask your doctor before doing anything! Octacosanol and polycosanol are cheap supplements that are supposed to decrease platelet aggregation, and there are others that have dual purposes. For example, Vitamin E can thin blood as well as killing free radicals, gingko biloba can help with memory as well as thinning blood, garlic thins blood as well as killing bacteria and fungi, and the most blood-thinning of all is Chondroitin which is used along with Glucosamine for arthritis pain and is credited with a 400% reduction in fatal heart attacks among users. I can testify that Chondroitin thins blood. I take all of the others mentioned here, but only Chondroitin thinned it so that I had trouble stopping bleeding when I cut myself shaving. I had to lower my dose after that. What you need is a doc who knows something about alternatives like this.
    Best wishes on a speedy recovery,
  14. garyandkim

    garyandkim New Member

    almost 2 years. For us it did not help at all. Our Doc who is a specialist in FMS has several other patients who also tried it and none had any luck with this treatment.

    But, I would say if you want to try it, go for it. As we all know what works for one may not for another. It is hard work to stick to the regemine of what is okay and not but, once you get use it it isn't so hard any more. We started the protical in 99.

    Hope you have good results!

    Take care, Kim and Gary
  15. Mikie

    Mikie Moderator

    I'm not sure how much the effect of being hypoglycemic has on the success of the Guai. In my estimation, one could reverse the symptoms of Guai without being on the low-carb diet and still have problems associated with the hypoglycemia.

    We are all sooooo different and the dosage, sals, and our diets all play a role in how effective this treatment is for us. I, myself, was not on a low-carb diet when I started the Gaui even though I am hypoglycemic. I did try to keep the carb level down, but I didn't realize the hidden carbs I was ingesting.

    I can have some sals in my regimen and still not block the Guai. This is good as I have to use sunscreen down here in the Jungle in the intense sun.

    I don't know the answers for why the Guai treatment seems to work so well for some of us and not for others. I do know that there are some people for whom the Guai will fail if they have ANY sals. There are also people who need as much as 2400 mgs of the Guai before it will work. I think a lot of failures might have been salvaged with a little more trial and error. Most docs just don't understand the protocol enough to know this.

    Love, Mikie