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ME/CFS: In Free Fall Through the Looking Glass
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On path to recovery.. Finally

Discussion in 'General ME/CFS Discussion' started by commonsense, Nov 28, 2013.

  1. Wayne

    Wayne Senior Member

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    Beaker, I understand where you're coming from, but I think you may be unduly parsing words. I myself like to think I'm resourceful, relentless and resilient; perhaps similar to what Commonsense was saying; we're just both using different words for our own unique individual feelings. And similar to Commonsense, I feel my own makeup has been of utmost importance in being able to keep going after so many years (30+) of dealing with some very difficult health issues.

    Will my own resiliency result in significant improvement going forward? I have no idea, but I do know that my attitudes serve me very well as a starting point, which at least gives me a very good shot at it, especially as new and important information keeps coming out. Commonsense's story on how he improved is the very kind of useful information that I think has the potential to help many of us on this board. --- Please reconsider using the very problematic term "Wessley school" to describe somebody else's experience.
    Last edited: Nov 29, 2013
    helen1 and SickOfSickness like this.
  2. Carolyn

    Carolyn

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    Thank you for that info, very helpful as I am just about to try some Daosin, and btw I do have low DAO , so will see if it helps ,
    All the very best to you !
  3. commonsense

    commonsense

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    My only advice take it before food. 30-45 minutes before. Good luck.
  4. beaker

    beaker CFS/ME 1986

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    I was not commenting on @commonsense.
    I get what you are saying. That is why I am fine /w @commonsense and their own outlook.

    I was commenting on @Beyond. That poster took @commonsense's words and elevated them to "the most important part of recovery" And it was followed by an xxlarge thumbs up.
    That is a slap to me.
    If it bothered me, it bothered others. Others worn down and no longer able to stand up and say, "hey, that is not true and not cool that you wrote that."

    I stand by my original comment. Because it is the same mentality. I'm sick of it.
    Iquitos likes this.
  5. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Hey beaker I wasn´t talking about attitude, My attitude is usually dreadful. Has always been lol I was refering to the fact that usually those that "heal" (normally regain functionality) from whatever chronic illness are those that never stopped looking for improvement. And is also important to believe you can improve, because techically speaking, you can.

    I don´t know why it bothered you. I wasn´t implying that those that are not getting better are not trying, or anything like that. I´ve been trying to get better and failing for years, in all honesty. You will agree with me that the most important thing to overcome an obstacle is "an indomitable spirit" or whatever words you prefer.
  6. beaker

    beaker CFS/ME 1986

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    It bothered me, b/c I am lying here wired tired unable to sleep trying to distract from pain that meds aren't touching after a shitty holiday with family that does not get it nor care to do so. So yes. my current attitude comes into play here.
    That is spilling over . And it's making me pissed off in general. I took what was written in that context.
    For the transference of that to you, I apologize.

    That said,
    I have known individuals who got sick, albeit in a milder form, do NOTHING but whine.
    Do nothing to improve their health. Put down others who are sicker b/c if they can do xyz it's "because they have a better attitude and really want to" and obviously those who are sicker and cannot , just aren't trying or want to.
    And then they go on to an almost full recovery.
    So yes. It does happen to those who do not have any bit of an "indomitable spirit" nor even know what that means.
    I've seen it. More than once. In other circumstances other than the specific person I was thinking of above.

    I started writing more dealing w/ general philosophy of attitude and overcoming obstacles. But there is no way for me in this state to write more and make any sense.
    For that same reason, I will bow out of this thread and wish you all well.
    Last edited: Nov 29, 2013
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  7. maryb

    maryb iherb code TAK122

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    @beaker
    we understand, its hard.......
    beaker and Wayne like this.
  8. SickOfSickness

    SickOfSickness Senior Member

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    So you did not follow a methylation protocol, just the first step (methyl B12)?

    I get only a minor difference from coconut water, vitamin C, magnesium citrate, and a clean diet. Small benefit from methyl B12. Antihistamines help a lot but only with a few symptoms like asthma. I looked at one list of top histamine foods and I don't eat those.
  9. commonsense

    commonsense

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    No I didn't follow a methylation protocol just Methyl B12 combined with B-Vitamin rich whole foods like lentils, sprouts, green leafy veggies, chicken etc.

    Did you try eliminating refined-sugar, processed foods, food additives and fermented foods from your diet?

    I just want all of you to remember that the elimination diet and b12 is what has made a huge difference for me. DAO supplements were just a small cog, and it probably helped me because I was on a restricted diet for so many months.
    Last edited: Nov 29, 2013
  10. SickOfSickness

    SickOfSickness Senior Member

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    Yes. Most people see a real benefit, I am noticing hardly any. I have hope I'll see benefits in the long run. My diet was not as good 2 and 3 months ago.

    I do drink tea, but it's organic and caffeine-free. (A lot of people reacting to tea may be reacting to the additives which are hidden in many teas as "natural flavor" or pesticide residues.) I notice a small improvement from tea, compared to the weeks I skip it. I am also adding back fermented vegetables next week.

    :thumbsup:
  11. Aerose91

    Aerose91 Senior Member

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    Funny, I have the exact same thing, and I was a high level athlete and personal trainer before this. It's not a problem with my body per se, but moreso my brain can't stay coordinated
  12. maryb

    maryb iherb code TAK122

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    @Aerose91
    exactly - it wasn't until xc described it that I realised that was me too!!
  13. camas

    camas Senior Member

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    So good to hear @commonsense! I've been following (for the most part) a histamine and tyramine restricted diet for about nine months and have also seen improvement. I'm doing it to try to lessen my histamine load because of leaky mast cells.

    I probably couldn't run to save my life :), but my energy has improved enough to allow me to get some projects done around my garden and home. The best part for me is that it's given me an energy plateau so I can count on a certain number of good hours every day.

    I've only had a handful of bad days since starting this diet and know what the triggers were -- a spider bite, and a mild cold. I also escaped my usual fall relapse. I think this may have been because I wasn't eating all the seasonal high histamine fruit I usually ingest.

    I am still drinking a couple of cups a tea a day and have the occasional chocolate. I may make another attempt at giving up tea. It's hard to break a 35 year habit!
  14. dannybex

    dannybex Senior Member

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    Hi Commonsense,

    A question about low-carb (and/or low sugars): How does this play into the histamine thing? I know many are on low-carb or paleo type diets, but I wonder if some of us need more carbs because our glycogen (glucose stores) may be very depleted…

    And secondly: How is a DAO supplement different from traditional OTC antihistamines?

    Thanks in advance,

    Dan
  15. commonsense

    commonsense

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    Hi Dan,

    From what I have read DAO actually degrades histamines in the gut while OTC antihistamines only block the mast cell receptors. Thats my layman's explanation, since I am no doctor :) In my personal experience its just better to avoid histamine rich foods as much as you can and use DAO on a need basis.

    I am not sure how low-carb/low-sugar diet helps, but in my personal experience it has made an immense difference. My low-sugar diet excludes ALL artificial and so-called natural sugar substitutes as well. Sorry couldn't be of much help there.
    Last edited: Dec 3, 2013
  16. commonsense

    commonsense

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    Great to hear that camas! Wish you good luck.
    camas likes this.

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