Guai Treatment Update

Discussion in 'Fibromyalgia Main Forum' started by Mikie, May 7, 2003.

  1. Mikie

    Mikie Moderator

    As I approach my two-year anniversary on the Guai treatment, I am happy to report that I think I am pretty close to being reversed. Sky, if you are still reading our board, let us know how you are doing. We both started the treatment two days apart in mid-May.

    Today, I cannot find any tender spots. At my last doc appointment, he could barely feel any. I have cut back on the Guai from 2400 mgs to 1200 without noticing any difference. I'm going to hold at that level to see what happens. My urine had grown soooo strong with the smell of the Guai that I think a lot of it was just passing through. If the spots return or I start having pain, I will go back to the 2400 mgs. If not, I will again reduce it to the maintenance dose of 600.

    A complicating factor is my CFIDS. I now know that I suffer from a Herpes-family viral infection. This happened by accident after I was given Famvir prior to my recent surgery. I Herxed and went into total remission. I am using the olive leaf extract tea to try to keep the infection under control. I believe that the OLE may be an exception to blocking the Guai as it reduces uric acid through excretion in the kidneys. Anything which does this also allows the kidneys to eliminate the phosphate debris which, according to Dr. St. Amand, causes the symptoms of FMS.

    I have also stopped taking my Doxycycline, as planned, to see what will happen with that. Research is showing that pulsing with antibiotics is more effective than staying on them nonstop. I'll have to see what happens to determine whether to go back on them. If I do, I will most likely start pulsing at closer intervals like one week on and one week off, or two week intervals. There are no models or roadmaps for this stuff yet.

    My goal is to return to work in July if I can keep up my level of health. Actually, as I rid my body of the infections, I hope to improve my level of health. My friends, I really believe we are closer than ever to getting a hold on our illnesses. Maybe not a cure, but enough treatments to keep us in decent health so that we can start living our lives again.

    I have been working out on my new exercise ball and doing some mild Pilates. This morning, I walked but only about a mile. I did jog about 1/8 of a mile just to see what will happen. I have to wear my chin strap as my jowls are still quite swollen from the surgery. Yesterday, I colored my hair a nice bright golden blonde instead of the light ashy color it had become. Then, I had a master stylist cut it for me. It feels soooooo good.

    I will continue my updates, but I want y'all, especially newcomers, to know that it is possible to feel better. What has worked for me may not work for all of us; we each have to find our own regimen, and we have to be patient. It's all a process of trial and error. The point is that we should never give up hope nor should we give up trying new things.

    Two years ago, I was bedridden much of the time. I was on Morphine for pain but determined to find other methods of handling my pain long term. I am still vulnerable to neurotoxins, like our Red Tide which is stil killing fish here, and allergins and environmental pollutants. I probably always will be and will have to be careful the rest of my life. I will never let stress rule my life again.

    Getting screwed by SS may have been a blessing in disguise as it has prompted me to be determined to heal. I can't live on their paltry payments and Medicare is not a good deal for me.

    I am not cured and I pray that I don't have a bad relapse, but for now, I am doing very, very well, just a little fatigue and cognitive stuff. I hope this will improve with the OLE to rid my body of the viral infection. I also hope it will give some comfort to others and inspire them to continue to look for answers. All my treatments originated here thanks to our wonderful members who are so generous with their knowledge and research data. Thank you all so very much and bless you.

    Love, Mikie

  2. MemoryLane

    MemoryLane Member

    Since you have been drinking the tincture tea, can you tell that you are receiving benefit from it? You seem to be on a role right now, maybe the OLE took up where the Famvir left off.

    Do you think you are healing quickly from your surgery?

    Just curious,

  3. Mikie

    Mikie Moderator

    I think it's too early to tell if the OLE tea will help. I know the Famvir is petty heavy duty stuff, so I might have to take more OLE to get the same results. I don't know yet whether it will interfere with the Guai. Problem is that the tincture is made with the whole grain alcohol, so there is a limit to how much I want to drink. I may have to get the capsules and see how it affects the Guai.

    My doc tells me I am doing great from the surgery. The swelling is still there but is rapidly receding. I pack ice in my chin strap and ice it up to try to get it down. It feels good too. I still have some numbness in my ears and on my neck underneath. It takes irritated nerves a long time to heal, but the numbness is slowly going away. My eyelids look great and so does the skin that was lasered underneath and on the sides. It's very smooth and tight but still a little pink. I can cover it with makeup. The dead skin has all sloughed off.

    I still have tick ropy scabs on the incisions under my chin and behind the ears. My right earlobe takes to bleeding every now and then, but the doc says that's OK. It stops if I apply pressure with a sterile pad. I can do everything now except arching my neck back. In two more weeks, I can even do that. I would say that with makeup on now, most people would not know I've had surgery. For the next three months, it's just supposed to keep getting better.

    Thanks for asking.

    Love, Mikie
  4. Mikie

    Mikie Moderator

    Thanks for your good wishes and I want to wish you the best with the Guai treatment. Don't throw out our shampoos or soap yet. Dr. St. A says that anything which is well rinsed off isn't as critical. I think in the beginning it is best to eliminate ALL sals, but you may be able to use your soap and shampoo once you get established on the treatment. I don't worry at all about what's in my shampoos or soaps. Our sensitivity to the sals differes from person to person, though. I can tolerate a few. I believe that the longer one is on the treatment, the less the sals play a part, although there is a point where they will block if you get enough of them in your regimen.

    The problem with SS is that they want you to be next to dead to qualify. If you are trying to get better, they don't want to give it to you. This makes you keep one foot in sickness and one foot in wellness. What I have found is that it isn't possible to heal doing this. We have to firmly plant both feet in the wellness camp and give it everything we've got. Depending on SS to help us also makes us feel impotent, frustrated, and angry even though we paid for it and deserve it. If SS were logical, it wouldn't take so long to get it and they would provide incentives for us to get better. As it is, they penalize people who try to get better enough to work a little.

    The Guai does take time, but even if it takes two years to completely reverse, where will you be in two years if you don't do it? That's how I looked at it. Basically, I had nothing to lose. Time goes by fast; I can't believe it's been two years already. Good luck and keep us updated.

    Love, Mikie
  5. angelheart

    angelheart New Member


    You probably don't remember me, but I started the Guai Protocol as the same time as you and Sky. I am happy to report that I am doing much better also. I am holding at a 900 mg. daily dose and think I may stay there because I am feeling pretty good. As you said, everyone is different and has to find the regimen that works for them. My niece recently became a Chriropractor and she has been of great help to me with some of my problems. I now see her every other week and I notice this has really helped my pain and energy levels. I finally have a dr. who cares about me--well actually she loves me--lol!!!! Through it all I have continued to work full time (but often wonder how I have done it). Actually my boss is very understanding and has been flexible with sick days and just leaving early if I have to. So, I am surviving. I still have occasional flares, but usually know exactly what has brought them on. My life is certainly different than it was 2 years ago, I have learned a valuable lesson on balancing my life. Without this illness I don't think I would be as compassionate to others or have such an understanding of my own body--both of which I think are so important. So as I tell my friends and family--I embrace the good days and try to understand and get through the not so great days. It could always be worse.

    Mikie, your posts have often been an inspiration for me and I just wanted to say thanks.


  6. Manwithfibro

    Manwithfibro New Member

    1) How do you know it wasn't the Famvir that healed you instead of the guai? Lots of research is pointing toward HHV6 infection causing this stuff.

    2) How do you know it is the medicine smell in urine? Guai is NOT supposed to smell upon urinary excretion. To prove this point, I had my wife, a non-FM sufferer take 2400 mg for a few days and her urine did not change. I go up just 600 mg in dose and my urine becomes foul. This, I thought may be phosphates or whatever coming out?

    Thanks TIM
  7. Dorothy45

    Dorothy45 New Member

    I am happy for you, and encouraged by the good news. I am going to try the olive leaf and yeast defense route first. I won't get into the long drawn out story now, but my gut tells me I am onto something. I will let everyone know has it turns out for me.
    I have to admit that this message board has been very helpful. Thank you for the guai update.
  8. Mikie

    Mikie Moderator

    Of course I remember you and it's so good to hear that the Guai has also helped you. You are right; my life will never be the same. As well as I'm doing, I just don't have the full energy as I once did and I have to manage it. You have a wonderful attitude about the gifts you have received from your experience with illness. It's so good to hear from you. Keep us updated.

    Love, Mikie
  9. Mikie

    Mikie Moderator

    You make a very good point about the Famvir. When one is on multiple treatments, it's often difficult to determine which is working. While I was on the Famvir, I was in remission, but it only lasted while I was on the drug. My fatigue and cognitive problems are slowly creeping back in. I associate these symptoms with my CFIDS.

    The Guai treatment addresses my FMS symptoms such as pain and tender spots. Even though the effects of the Famvir are wearing off, the relief the Guai has given me remains.

    Everyone's urine is probably different. When I was releasing so much debris that it could easily be seen in the toilet, it had a distinct odor. My urine lately does not smell like that but rather like the odor of the Guai itself. Also, my sweat no longer has such a sour odor.

    Now, everything is complicated by my Doxycycline treatment. While on the Doxy, I do not suffer from IBS, migraine-type headaches, low-grade temperatures, chronic sore throat, or swollen glands. Just before the surgery, I was suffering from a low-grad temp and I wonder whether it's the Herpes-family infection I obviously suffer from. I have stopped the Doxy and will see what happens.

    Last time I quit it cold turkey, my own immune system went into overdrive and I felt great. Problem is that when the immune system is in overdrive, it can turn on the body and produce autoimmune response. I went back on it and tapered off, but it didn't work as well. I'm going back to the cold turkey again to see what happens. I may pulse in shorter intervals for a while. It just depends on how I feel. Perhaps if the immune system does go into overdrive, it will take care of the Herpes problem too.

    Who knows? We're just groping in the dark on these treatments. Dr. Nicolson told me to get off the Doxy just as soon as I can without the symptoms' returning.

    Love, Mikie
  10. Mikie

    Mikie Moderator

    Thanks for the inerest and good wishes. I pray for all of us every day. It takes sooooo much work just to manage our illnesses, but I do think in the long run, it pays off.

    I do believe we have cause for optimism as more and more research is done. Perhaps one day, there will be a cure, and we won't have to spend all our time trying to get and stay healthy.

    Love, Mikie
  11. Mikie

    Mikie Moderator

    Please, help yourself. That's why I post updates because the Guai has helped me so much that I'm hoping others will at least give it a try even though it's not the easiest of treatments.

    Love, Mikie
  12. Mikie

    Mikie Moderator

    Thanks for the good wishes. What is the ISAC approach? Forgive me; today I'm feeling rather tired. The same thing happened for the first few days after I quit the Doxy last time.

    I really do feel as though my FMS is pretty much reversed, but the CFIDS problems continue. I am really excited, though, to have learned acciddently that I most likely have an active Herpes virus because it can be treated. So far, the olive leaf tea hasn't done much, but on the other hand, I am doing three things differently, so who knows? It will all shake itself out here shortly. In the meantime, I'm just taking it easy except for exercising. I made it through the 40 minute Pilates workout which amazed me cause I had gone out walking and even jogged a wee bit. I think today, I'll let my muscles rest a day.

    I have a new pic to put in my profile, but it's not all that flattering as I still have a lot of swelling and you can still see a little pucker from one of my eyelid incisions. It sure beats the first one I posted, though, so I'll put it up for a while.

    I wish you could get to where the Herxing isn't so bad. I guess on the one hand, though, you can see that it's really killing off a lot of the nasty little critters. At some point, the Herxing should level off as more and more of the mycoplasmas die. It's weird that instead of the burning from the Guai Herxing, I got chilling in the torso from the Famvir herxing. I hope you and your lovely bride get to feeling better. Take care.

    Love, Mikie
  13. sujay

    sujay New Member

    Glad to hear you're planning to go back to work, though we don't want you to forget about us, of course. Try doing a search on ISAC above; Jellybelly has some great posts, and I've tried to add my 2 bits as well. HEMEX Labs in AZ has an informative website, and I'm happy to answer questions if you can get a little more specific. Also see Dave Berg's Interview in the archives. He's the Director of HEMEX Labs (and his wife, Lori, developed a lot of the assays., originally to help women with infertility; they've got a lot of really cute baby pictures up on the wall at their lab.) ISAC stands for Immune System Activation of Coagulation. Let me know if you need any more help figuring this out. I am absolutely convinced that understanding this concept is what has allowed me to get back to work and my 12 year old son back to school and sports and whatever; I can't keep up now because, although not yet completely symptom-free, he's back to being a normal kid. He's one of the big reasons I'm campaigning so hard for better understanding of this issue. I hate to think of any child being constrained by this disease, and my heart goes out to any parent who is struggling with this. OK, sorry I'm getting off track here. Someone was saying she couldn't remember the beginning of a long post by the time she got to the end. People like me have got to be a big part of the problem. Sighning off for the night. (Pun not inteneded, but it seems apt, so I'm leaving it be.)
  14. Mikie

    Mikie Moderator

    I have been reading the posts on hypercoagulation but didn't recognize the term, ISAC. My memory has been just awful with this Red Tide neurotoxin thing going on down here. Also, until I read your post, I didn't think I could have hypercoagulation after hemmoraging post surgery.

    Thanks for your response and I'll reread the material. Right now, I'm concentrating on finding something for my obvious Herpes-family chronic viral infection.

    Love, Mikie
  15. fishfoto

    fishfoto New Member

    Mikie-you mentioned coloring your hair--what do you use? My homeopath has mapped substancial pain flares 7-10 days after coloring my hair and now I am looking old and gray. I FEEL old and gray at 48 but don't want to look it! My hair person won't use anything natural because she has had bad results. Any suggestions? I am rarely here-so glad to read of your progress-a bright spot!
  16. Mikie

    Mikie Moderator

    I used to use Nice 'n Easy but they have changed their formula and it left my hair dried out. I tried Garnier Neutrisse, but their colors aren't true. I used Clairol Hydrience this last time and the color was perfect, not too ashy and not too brassy which can always be a problem with blondes. The hydrience contains a lot of conditioners and didn't leave my hair dried out.

    I found out after the fact that when you have facial surgery, they wash your hair with some kind of sterile solution while you are under. Whatever they used really dried out my hair. In addition, you have to shampoo your hair the night before the surgery and leave the shampoo on for 10 mins. Then, you have to do it again the morning of the surgery. That's another reason I decided to get it cut, to get rid of the dry haystack ends.

    Love, Mikie
  17. sujay

    sujay New Member

    Glad to be of help. Let me know if you have any further questions. I don't ramble so much in the morning.

    Best regards,
  18. rosebud41298

    rosebud41298 New Member

    I just found this site today and love it as you will see how many messages. What is Guai? Guaifenesin? Also what are these teas that are being talked about like tincture, etc.?
  19. TNhayley

    TNhayley New Member

    Did you get a chance to read Mark London's paper on Guai? I found of great interest the parts that stated that Guai has more than just phosphate eliminating properties ... like skeletal muscle relaxant effects, anticoagulant effects, etc. To me, it's all the more reason to keep Guai-ing. At the same time, I think it's important to understand what guai can do ... especially if you are taking another drug for hypercoagulation, etc.

    Sujay ... I would be very interested to hear your opinion of Mr. London's paper. It can be found if you do a search here on "The Truths and Myths of the use of Guaifenesin for Fibromyalgia". He talks about anticoagulation in fibro and provides links to studies. I can also email the url to anyone who wants it. Warmest regards,
  20. Mikie

    Mikie Moderator

    Good grief, I didn't realize this old post had been dredged back up, so I'll try to answer the latest responses.

    Rose, yes, the Guai is short for Guaifenesin and you can do a search here to find all our posts on the subject. You can also do a library and web search to find more. I recommend Dr. St. Amand's book, "What Your Doctor May Not Tell You About FIBROMYALGIA." A tincture is just an extract suspended in liquid, in the case of the Olive Leaf Extract, the liquid is grain alcohol.

    Pat, I started out at 300 mgs. twice a day. I did flare at the 600 mgs but it was no worse than an ordinary flare. I kept increasing the dose until I arrived at my current 2400 mgs. The worst flare was when I went from 1200 to 1800 mgs. I had to go back and then try again later. As with everything else, all our experiences with the Guai are different and it is impossible to predict how it will affect any one person. Learning to tweak the dose takes patience unless one is a textbook case like me.

    Hayley, I didn't get a chance before leaving to read the whole thing. I bookmarked it on my home computer, but I am up in Atlanta using my kids' computer. I am devoting this time to doing antiviral treatment research. So far, I've been too tired to even do that. The drive up here did me in. I need to rest. I'll read it when I get back home.

    Seanna, good luck to you with the Guai. Perhaps you do not have hypoglycemia so are not noticing any difference with changes to diet. In any case, eliminating the carbs is a healthier way to eat. You are going about starting the whole thing exactly right and I hope your results are as good as mine have been. Please do keep us updated.

    Love, Mikie