Ah, Sweet Remission--Update

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Nov 8, 2002.

  1. Mikie

    Mikie Moderator

    As most of y'all know, I am pretty close to having my FMS symptoms reversed by the Guai treatment; however, I continue to fight the fatigue and cognitive problems associated with my CFS. Also, as most of y'all know, I am on a "chemical peel" in a bottle (actually eight bottles) from my plastic surgeon because of sun damage and damage to my skin from being sick for so long. I have had to suspend the Guai treatment because of the sals in the skin-care products.

    These products are amazing, but expensive. They actually go deep into the dermis and bring all precancerous cells to the surface where they look like little pimples. They eventually slough off as do the brown hormone/sunspot blotches. We have so much skin cancer down here in Florida, it is nice to be able to get rid of the precancerous cells before they turn to skin cancer. Of course, I have to wear sunscreen all the time. I am also doing the backs of my hands, and they are starting to look healthier too. But, I digress.

    My big news is that I have had a few days of remission, despite a bladder infection which kept me in bed one whole day. I was able to hold the infection at bay for days with my zapper, but it just wouldn't completely go away, so I got some medication from my doc. I have been taking a lot of extra supplements to try to make up for not being on the Guai and I guess they are working. Of course, when I am able to go on a twice-a-week regimen with the skin-care products, I will return to using the Guai, which will only work part time due to the products. I am hoping that will be enough to keep the FMS symptoms from returning and to keep the phosphates eliminated.

    I actually went to the outlet mall yesterday and walked quite a bit. I've been cleaning and organizing around the condo, trying to be mindful of not overdoing it. I went a year with very few days of remission, so this is a God send.

    I am continuing my hynotherapy which I credit for a lot of my progress, mentally, spiritually, and physically. For the first time in two years, I can actually fathom a future for myself. My progress is soooooo slow, but I am hoping to be able to work at least part time by summer. I am taking this time for gearing up for returning to life by getting my household in order, resting, doing my spiritual work, and enjoying the beauty down here during the upcoming season when the weather is so wonderful.

    The reason I am posting this update is because we have so many newcomers to our board. I want people to know that through trying different things, through trial and error, and through a huge leap of faith, it is possible to improve. The nature of our illnesses is one of remission and relapse, but there are many who improve and do not relapse. I am hoping that is the case for me. Either way, I will make the most of this remission period and hope the healing continues.

    Lest anyone think I have a "light" case of FMS and/or CFS, I assure you that two years ago, I could barely walk from one end of my condo to the other without hanging onto something. I was in bed for five days at a time and in so much pain that I was on Morphine. I seldom have to take anything for pain now.

    For the curious, in addition to the Guai, I take Klonopin for sleep with a smaller dose during the day for anxiety and sensory overload. If I could only have one drug, it would be the Klonopin. I also take estrogen and progesterone and Doxycycline for my chronic mycoplasma infections. One of these days, I will be able to discontinue the Doxy when enough of the stealth mycoplasmas are killed off and my own immune system is stronger. I take undenatured whey and colostrum to build my immune system back up. I do my physical therapy every day and try to walk, lift weights, and swim for exercize.

    My regimen is customized just for me and may not work for others. We all have to find our own treatments. Accepting our illnesses is crucial to healing, but that doesn't mean we ever give up looking for treatments which work and, hopefully soon, a cure. Bless you all in your search for wellness and healing.

    Love, Mikie
  2. Mikie

    Mikie Moderator

    As most of y'all know, I am pretty close to having my FMS symptoms reversed by the Guai treatment; however, I continue to fight the fatigue and cognitive problems associated with my CFS. Also, as most of y'all know, I am on a "chemical peel" in a bottle (actually eight bottles) from my plastic surgeon because of sun damage and damage to my skin from being sick for so long. I have had to suspend the Guai treatment because of the sals in the skin-care products.

    These products are amazing, but expensive. They actually go deep into the dermis and bring all precancerous cells to the surface where they look like little pimples. They eventually slough off as do the brown hormone/sunspot blotches. We have so much skin cancer down here in Florida, it is nice to be able to get rid of the precancerous cells before they turn to skin cancer. Of course, I have to wear sunscreen all the time. I am also doing the backs of my hands, and they are starting to look healthier too. But, I digress.

    My big news is that I have had a few days of remission, despite a bladder infection which kept me in bed one whole day. I was able to hold the infection at bay for days with my zapper, but it just wouldn't completely go away, so I got some medication from my doc. I have been taking a lot of extra supplements to try to make up for not being on the Guai and I guess they are working. Of course, when I am able to go on a twice-a-week regimen with the skin-care products, I will return to using the Guai, which will only work part time due to the products. I am hoping that will be enough to keep the FMS symptoms from returning and to keep the phosphates eliminated.

    I actually went to the outlet mall yesterday and walked quite a bit. I've been cleaning and organizing around the condo, trying to be mindful of not overdoing it. I went a year with very few days of remission, so this is a God send.

    I am continuing my hynotherapy which I credit for a lot of my progress, mentally, spiritually, and physically. For the first time in two years, I can actually fathom a future for myself. My progress is soooooo slow, but I am hoping to be able to work at least part time by summer. I am taking this time for gearing up for returning to life by getting my household in order, resting, doing my spiritual work, and enjoying the beauty down here during the upcoming season when the weather is so wonderful.

    The reason I am posting this update is because we have so many newcomers to our board. I want people to know that through trying different things, through trial and error, and through a huge leap of faith, it is possible to improve. The nature of our illnesses is one of remission and relapse, but there are many who improve and do not relapse. I am hoping that is the case for me. Either way, I will make the most of this remission period and hope the healing continues.

    Lest anyone think I have a "light" case of FMS and/or CFS, I assure you that two years ago, I could barely walk from one end of my condo to the other without hanging onto something. I was in bed for five days at a time and in so much pain that I was on Morphine. I seldom have to take anything for pain now.

    For the curious, in addition to the Guai, I take Klonopin for sleep with a smaller dose during the day for anxiety and sensory overload. If I could only have one drug, it would be the Klonopin. I also take estrogen and progesterone and Doxycycline for my chronic mycoplasma infections. One of these days, I will be able to discontinue the Doxy when enough of the stealth mycoplasmas are killed off and my own immune system is stronger. I take undenatured whey and colostrum to build my immune system back up. I do my physical therapy every day and try to walk, lift weights, and swim for exercize.

    My regimen is customized just for me and may not work for others. We all have to find our own treatments. Accepting our illnesses is crucial to healing, but that doesn't mean we ever give up looking for treatments which work and, hopefully soon, a cure. Bless you all in your search for wellness and healing.

    Love, Mikie
  3. rbtheidmanhabs

    rbtheidmanhabs New Member

    Hi Mikie!

    What on earth is a Guai treatment.Can you please explain.

    Bob
    [This Message was Edited on 11/09/2002]
  4. fibolady

    fibolady New Member

    it is a search for wellness and healing. the ups and downs are tremendous, but i know there has to be a better health for all of us, we have just have to find the right combination through trail and error.

    the chemical peel sounds like you really have guts! if you continue to feel better will you still go back on the guai treatment. for someone who asked, you can do a search and bring up back posts. there is also a book "what your doctor may not tell you about fms" authors amand and marek. it is a very thorough book and if you decide to try this, would recommend the book.

    warm regards, fibolady
  5. AnnetteP

    AnnetteP New Member

    Its always so nice to hear positive news. I, myself, feel I'm cured of CFS...cured only as long as I take a ton of pills daily lol. So, I walk a tight-rope with my condition, but as long as I err on the side of caution (healthy diet, low stress, etc.) I seem to remain upright in this fight.

    Okay, being vain like I am, what's the name of the skincare you are using? I have tried a lot of them (from dermatologists), but never have I heard one billed the way you described it. It sounds so interesting and I love to try new things. (Please don't tell me its Obagi; I did it and, while I made it through, my reaction was so bad I looked like I had acid burns ugh.)

    Annette
    [This Message was Edited on 11/09/2002]
  6. Mikie

    Mikie Moderator

    I appreciate your good wishes and your interest.

    Bob, the Guaifenesin treatment is really way too much to go into in one post. Fibrolady has given you some good advice. You can get the book, which is excellent, whether or not you ever go on the Guai treatment, you can perform a search here and find all our posts on the Guai, or you can do a web search on Guaifenesin. There's lots of info out there on it. I'm sorry to pass the buck like this, but when you get the info, you'll understand why it's too much for one post.

    Sue and Annette, I'm glad you both are doing so well too. I think it's really important that new people can see that, even though it takes time and diligence, it is possible to live a good lifestyle with our illnesses.

    Sorry, Annette, it is the Obagi products that I am using. The first week, I looked like I had just had a chemical peel. My face was quite red and had red sore blotches like chemical burns. After that, the skin started to peel and I looked like a shag carpet. After a month now, everything has settled down and while there are still a few sore spots where the precancerous cells emerge, my skin looks much healthier. They gave me a bottle of stuff in case I had a bad reaction, but I haven't had to use it. This doc will not do a chemical peel, laser resurfacing, botox, or any surgery until the patient has completed the four-month treatment. He says after four months, I probably won't need or want a peel.

    I do plan to return to the Guai treatment. While I am very close to being reversed, the Guai treatment is for life unless one wants to backslide into having the body start redepositing the phosphate debris in the tissues. I figure at this point, I can backslide for three more months. When we allow sals into our bodies, the Guai does not work for about 24 hours. When I go to the twice a week skin regimen, I will lose a couple of days a week from the Guai treatment. I think I can stay on top of it at that rate.

    I hope this answers all your questions and thanks again. For all y'all who are doing well, let our newcomers know about it and tell them what you are doing.

    Love, Mikie
  7. ssMarilyn

    ssMarilyn New Member

    I bet alot of your improvement is also due to your better way of eating. I know you eat Sommer's style, which is very close to Atkins style. My sister started the Atkins diet about 4 days ago and I just talked to her on the phone and she is ECSTATIC! She's lost FIVE pounds and has never been able to do that on any other diet before. She also asked me if this diet had anything to do with improving energy levels and mood and I said "OH YES! This is one of the best things about the diet besides the weight loss!" She has been buzzing around her house cleaning closets and scrubbing floors and she said she hasn't felt this way in years!

    Diet has a lot to do with our health and the way we feel!

    Marilyn :)
  8. karen2002

    karen2002 New Member

    The sun is shining brightly here in Texas, today, and you just turned the volumn up another notch. Thanks! We all need messages of encouragement and hope.
    Best wishes,
    Karen
  9. Mikie

    Mikie Moderator

    Marilyn, I think you are right. The first week on the diet, I was exhausted, could hardly keep my eyes open. Now, my mood is up and I have more energy. Carbs must be horrible for us.

    Thanks, Karen, for you good wishes.

    Freemind, I also wish people who are healing to tell us about it. I hope all of us will eventually look back on this and say, wasn't it awful before they found that cure. I pray for us all every day.

    Love, Mikie
  10. tedebear

    tedebear New Member

    Hi Mikie,
    Happy to hear your on the up and up.

    I think you made an important remark when you said your regimen is cusomized for you. Each of us does what we think helps us or the doctors advise us to do. That's important I believe, because no 2 people are alike.
    Take care. Soft hugs.
  11. poodlegirl

    poodlegirl New Member

    I was reading thru the posts (I have been unable to keep up with them due to not feeling well and other things-too long to go into) and saw Mikie's post on how her symptoms are nearly reversed. Today my mom gave me a bottle of cough syrup with Guai in it. She said she read a study where patients with FM who took cough syrup (containing Guai) for congestion actually was improved in their FM symptoms.
  12. obrnlc

    obrnlc New Member

    hi mikie--glad you are doing so well. you are my inspiration regarding the guai protocol! I am feeling so positive that will work for me--just getting started. you mentioned sunscreen and i know certain cosmetics have to be avoide due to salic.--are all of the sunscreens sal-free, or can you give me the name of a specific on? I was in a GNC today buying supp. to follow other protocols you all have recommended, and the sales clerk never heard of salicylates! You are the guai poster child and any extra tips will be very appreciated! Thanks, Laurie
  13. Mikie

    Mikie Moderator

    Tedebear, obviously not everything I am doing will work for everyone else and it is not my intention to suggest that; however, I did learn about all these treatments by reading other peoples' posts here. That is why I think it's valuable for those of us on the mend to share what is helping us. It's up to each of us to decide whether we might want to try the treatment. Most docs cannot be relied on to provide adequate treatment for us because they lack the knowledge of our illnesses. It's up to us to become educated and, in turn, educate our docs so that, hopefully, they can use this knowledge to help others.

    Poodlegirl, taking the Guai in syrup form is not recommended. In the first place, you may also be ingesting alcohol (could this be why people feel better?), sugar, and artificial colors. None of this is good for us. The Guai, in any form, will have no effect on FMS unless salicylates are eliminated. Just taking the Guai doesn't work. If you want to know more about the Guai, do a search here on the board, in our library, or on the web.

    Laurie, do a search on salicylates or salfree on the web and it will give websites where you can get lists of sal-free products. You still have to carefully read the labels because these lists are not always updated when the manufacturers change their formulae.

    Love, Mikie
  14. Jasmine

    Jasmine New Member

    Hi Mikie,
    I'm so glad that you are feeling so well now. It always makes me happy to read about people who have recovered or improved substantially. It reminds me that there is a light at the end of this dark long tunnel. I have been feeling better lately with watercure and the new sea salt recommended on the watercure site. My low blood pressure is getting closer to normal and I'm feeling pretty good.

    Love, Jasmine
  15. Mikie

    Mikie Moderator

    So good to hear you are doing so well. Good for you.

    Love, Mikie
  16. selma

    selma New Member

    Smiling ear to ear. GOD bless you.
    :) :)

    Love hearing good news.