CFS: Forebearance's thread 72

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jan 1, 2013.

  1. Forebearance

    Forebearance Member

    Hi everybody,

    I'm just hanging on by my fingernails these days.

    Still trying to figure out how to get rid of the fibro pain in my knee. I had to go back to using a cane, but at least this one only has one point on the bottom.

    I'm taking a break from all forms of MAF. I have some KMAF, the homeopathic version, but I'm waiting until I'm in some kind of stable situation before I try it. I do miss the stamina MAF gives me when I don't take it.

    Increasing Vitamin D has made me decrease the amount of calcium and magnesium I take, and that is still ongoing.

    I'm still taking some methylation supps, Virastop, Candidase, Lauricidin and mushroom extract. I've been experimenting with aloe vera capsules that contain the inner parts, not the green outer leaf, and they seem to be good for me. It seems like the jelly must be soluble fiber. The outer leaf is a laxative, so I don't need that.

  2. mbofov

    mbofov Active Member

    Sorry to hear you're having such a rough time!

    Re your knee - I've been reading about collagen supplements, they seem to generaelly come in two forms, Collagen I and III together, and collagen type II. There are lots of good reviews of people getting help with their joints with these products. Many also say they should be taken with hyaluronic (sp?) acid. I've just ordered some type II collagen that has hyaluronic acid with it, will see. I have trouble with my left knee due to an injury many years ago, have been treating it with magnesium oil, and occasionally wearing a knee brace from the drugstore when it hurts too much. The brace really helps support it. Anyways, am going to try the collagen also, starting with the type II. It's also supposed to be very good for the skin! would not mind that.

    Do you take vitamin K2? That's suppsoed to help with proper calcium absorption and I've just ordered that too. THere seems to be no end to these supplements!

    I'm still doing my qigong - I think it could help any condition. I think it's already helping me with my extreme sensitivity to detoxing - e.g., I can now tolerate gelatin (also good for joints!) which I take at night for sleep. Before it hit me like a truck, because it also helps with detoxing. Also can tolerate taurine now. I may have told you, am using the beginning set from Spring Forest - I like it a lot, has a special meditation CD (different than usual meditation, specific for qigong) and a DVD with exercises plus a book.

    Take care -

  3. joanierav

    joanierav Member

    i love reading your messages, to see what you've been up to. you never cease to amaze me, what all you've been through , and everything you've tried, with all the traveling , camping, motels etc etc. all trying to feel better. ppl would not believe, what all we've done , tried , and been through.

    i am so sorry that you've had a set back. please keep your chin up. and know that you will be in my thoughts and prayers.

    hugs, joanierav
  4. Forebearance

    Forebearance Member

    Hi Mary!

    Thanks for all the knee suggestions! I haven't tried collagen or HA or a brace.
    I did take K2 for a while, when I was replacing all the fat-soluble vitamins that cholestyramine sucks out. I didn't feel anything from it, but maybe I should try it again.

    Another thing I tried was Strontium, because Dr. Oz suggested it. It is also supposed to help calcium absorb better. Around that time was when I became over-calciumed, because I was taking a lot of calcium and it must have started absorbing better.

    I'm so glad your qi-gong is helping you!
    I love to meditate, too, but it's just the regular kind of meditation.

  5. Forebearance

    Forebearance Member

    Aw, thanks, jam!

    I'm sorry to hear about your knee. You guys are way ahead of me in dealing with knee stuff. So far I've just taken glucosamine for it. So thank you for the ideas!

    I'm pretty sure it's fibro, because my doctor diagnosed it for me. It's weird how every doctor in my town knows what fibromyalgia is, but none of them know how to diagnose CFS.

    I suspect it's caused by a build-up of toxins because I am setting them loose inside faster than I can excrete them. It started after I'd been stimulating my immune system with MAF and Vitamin D.

  6. Forebearance

    Forebearance Member

    Wow, thank you so much joanierav!

    Yeah, it would be really hard to explain my life to a casual outside observer. Thank goodness the people who support me understand it a little bit. The thing that's been hard lately is finding a place to stay. I'm running put of towns, hotels, etc. But then I've felt this way before and something else has shown up. So I'll just take it a day at a time.

    I hope you are doing well these days!

  7. mbofov

    mbofov Active Member

    I have been doing regular meditation for quite awhile and do like it very much.

    But the Qg meditation works on moving qi around the body - it's different. And I think I'm starting to see what they mean when they talked about energy blocks. I've noticed a constant tension in my neck which I think was there all the time I never paid attention to, but when I do the qg meditation, that tension begins to seem like an energy blockage, and there's a technique for dissolving blockages. I think it's a slow process but I've had a few strange things happen (some really old feelings coming up that I was not aware of).

    Anyways, the theory of qg is that most illness is due to energy imbalance or energy blockages, and I'm beginning to suspect energy blockages may be key for me. Will see --- It's interesting ---

    Take care -

  8. Forebearance

    Forebearance Member

    That does sound interesting, Mary.
    I'm a little bit familiar with the eastern idea of energy blockages.
  9. Forebearance

    Forebearance Member

    Well, I finally tried taking less potassium, and it helped my knee pain a lot.

    I had been taking extra potassium for a year and a half, because of Freddd's theory. I'm mad at myself for trying a little bit of his suggestions, even though his theory didn't feel right for me. It seemed harmless to experiment with minerals.

    But actually, minerals seem to be very powerful for me. Too much or too little of any of them can really affect my quality of life. And I have to keep them all in balance with each other.

  10. lesliesue

    lesliesue New Member

    Hi Forbearance and everyone,

    I was up here a while ago and could not find the boards again, until today. I have now bookmarked you all. : ) can you tell me what kind of aloe vera capsules you are using? I recently watched Hungry for Change. That movie has a lot of good information in it. One piece I came away with is that aloe Vera and chia seeds are great for detox because of the gel. It basically binds toxins together and you excrete them.

    I seem to be having a weird allergic reaction...maybe to chia seeds....don't know. I figured maybe I'd try aloe. I know in the past we have discussed Dr. Shoemaker. The thing that really interested me about the info about detox w/ the aloe or chia is that is sounds very much like what Shoemaker uses......the cholestyramine binds toxins together and you excrete them.

    I wish I knew more about it. Anyway, I was very happy to see your post up here. I hope you are feeling better.

    Mary, I have read a couple of your posts. It looks like we are in similar places. I am all about detox right now. Do you have any suggestions of things that have worked for you in the past?

    Thanks everyone!
  11. mbofov

    mbofov Active Member

    Yes, I've been all about detox for several years, having a very strong reaction to many things, especially anything remotely connected with detoxing, like certain amino acids.

    I don't know you if you saw my other post of last week, "it's official: I'm detoxing less" something like that. It has more info.

    In recent weeks I suddenly am tolerating things (like gelatin (high in glycine) and taurine) which used to cause a very strong detox reaction in me, such that I couldn't take them. Also am now tolerating better an HCL detox protocol my chiro gave me, though I still have to be careful with this one, I am having a reaction to it, just quite a bit less.

    The only things I can think of that I've done differnetly which might be helping are: (1) acetyl-glutathione - not the same at all as reduced glutathione. Look at my other post, I explain about it. I took a relatively small dose for about 4 months, and it might have made a difference, I just don't know. the only problem is it's rather pricey, but c'est la vie. I'm not taking it right now as money is an issue. And I had no reaction to teh ACG while taking it, but it may have been helping me anyways.

    And (2) - I've been doing qigong exercises for about 2 months, from Spring Forest , you can find them on-line. I do them sitting down, they're not streuouis at all, and there's a meditation CD that came with the package specifically geared towards balancing and increasing qi. This may be a factor as well, I just don't know. I do know I like doing and have done it every day except when I am just too sick and tired, but most days I can manage it.

    So those are my suggestions. I have tried so many things - chlorella, apple cider vinegar, cayenne, far infrared sauna, a mercury detox - and everything was very rough on me, but am curious now to try some of these things again and see how I do. So far so good!

    Good luck -

  12. mbofov

    mbofov Active Member

    I'm sorry the potassium was increasing your knee pain! I know I pushed it a lot for you because it helped me so much. We are all so different!

    You might take a look at a post I did called something like "she was bedridden, now has energy" just a couple of days ago. The reason I suggest this is because of your very strong reaction to methylation supplements and maybe even the potassium. The "she was bedridden" post was written by ljimbo where she explains how the FODMAP diet (you can google it) fixed her digestive system and suddenly she could tolerate the methylation supps and her energy picked up a lot. She could now tolerate the increased methylation which she could not before. It just sounded a lot like you.

    Take care -


  13. lesliesue

    lesliesue New Member

    I took a qigong class a while back and that is a good idea to get back into that. I have also tried all kinds of detox. I don't even remember everything I have tried over the years. I agree that as we get a bit healthier we can probably retry some of the things we couldn't handle before. I am trying to keep it simple. I can get overwhelmed very easily with too many supplements, etc. I am not sure I am familiar with HCL detox. Can you tell me a bit more about it?

  14. mbofov

    mbofov Active Member

    the HCL detox is something my chiro gave me. It consists of two products from Premier Research Lab called Quantum HCL Activator and Quantum Betaine HCL. Quantum Nutrition Labs also makes them. I know the names sound a little hokey but these two products pack a punch.

    They're supposed stimulate to detoxing at the cellular level and increase methyl groups. The recommended dose is 3 caps of each 3 x day. "sensitive" people should do 1 cap each every other day. I found that initially I could only tolerate 1/2 a cap of each about every 3 days, and even that was sort of rough.

    So now that I seem to be detoxing better, I can do 1 cap of each every 2 to 3 days, so basically about twice what I was doing before. If you google "HCL Detox Kit (3 products)" and click on the 2nd link to come up, you'll get more info.

    If you try this and have a rough time with it, I suggest you give the acety-glutathione a try - I tihnk it helped me with my detoxing and probably am going to order more. Also, I think the gigong helped too. I've been doing it faithfully for 2 months now. google "Master Zhou" - he has a website. He's a qigong master in Los Angeles and is pretty amazing. He's an inspiration to keep doing the qigong! :)

  15. Forebearance

    Forebearance Member

    Hi Lesliesue,

    I'm taking Carlson aloe vera gel caps. They are tiny and really economical. I think one jar is going to last me months!

    Aha! I knew that aloe gel must be soluble fiber. Thanks for confirming that.

    Yes, soluble fiber does similar things as cholestyramine, except it is much gentler. In my experience, the order of strength for those toxin binders is:

    Soluble fiber

    The only thing gentler than soluble fiber would be something like eating an apple, which has a lot of soluble fiber in it.

    So I guess you find the place in that list where you are comfortable and get good results.

    Thanks for the good wishes! I hope you are feeling better, too.
    The movie sounds interesting.

  16. Forebearance

    Forebearance Member

    Thanks, Mary!

    My digestive system isn't a problem area for me, unlike a lot of people with CFS. But my liver is a big problem area. I think that may have something to do with my sensitivities.

    Take care,
  17. Elisa

    Elisa Member

    Hi Forebearance,

    Just wanted to say HI and thank you for posting your updates...its comforting to read about your life and your courage!!!!

    Take Care,

  18. mbofov

    mbofov Active Member

    Please forgive me if I'm being a pest, information about a liver detox is probably old information for you or just not applicable.

    I had major problems with my liver until I did a liver detox almost 10 years ago, under my chiro's supervision. Muscle testing revealed toxins from heavy chemical solvent exposure in a job I had at age 19, which was affecting me rather badly some 30 years later. The detox was a bit rough but I stuck it out for a month, and my liver has been much better ever since. I also started taking milk thistle at that time, and also HCL (hydrochloric acid) with meals. Without the extra HCL my gallbladder didn't work right and hence stressed my liver.

    Before the detox one glass of wine would make me sick for an entire day and 2 glasses would wipe me out for 3 days. I can tolerate it just fine now and my whole digestive system is so much better.

    The chiro used muscle testing to determine the root problem with my liver which was overloaded with toxins, although I had a good guess that the chemical solvents were the problem, surprised my chiro with it. And he gave me Parotid and Cholacol II by Standard Process for the detox.

    Best wishes,

  19. Forebearance

    Forebearance Member

    Hi Elisabeth! I hope you are hanging in there.

    Thanks for the thoughts, Mary. I'm so glad you got your liver into better shape by doing the detox!

    Yeah, I've been taking milk thistle for a long time. I'm currently thinking about trying a very gentle detox helper called Floressence (I think).

    There are some genetic issues for me, because my whole life I've been sensitive to medications and chemicals and could never handle much alcohol, and it is clear that those traits come from my parents.

  20. Forebearance

    Forebearance Member

    Hey! I like the Flor Essence a lot!
    It was gentle and effective.

    It did make me very sleepy the next day. Detox usually does that to me. But it was a good kind of sleepy.

    The effect of my first dose, which was a half dose, has lasted a couple days. I know that sometimes things work best at first and then their effectiveness diminishes, so we will see what happens.