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NAC makes me feel alive--just found that out. Why is this?

Discussion in 'General ME/CFS Discussion' started by Wilderbessy, Sep 28, 2018.

  1. Wilderbessy

    Wilderbessy

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    Hi guys. For the longest time I didn't figure out what was causing a few of my fleeting good times..and yeah there's plenty of factors.

    Horrible face pressure/fatigue (eyes always drooped, extra eyelid forms on left side when I feel bad), bodily weakness and even some neuropathy, anxiety, fibromyalgia, brain fog, thin skin, chemical intolerances, GI issues, asthma+difficulty breathing through nose, just an overall "trapped" bodily feeling because I barely felt anything but this stuff.

    This actually has been consistent my entire life--especially when I went outside, I remember feeling "f'ed up" as if the bodily stress was just curling up. Very disorientated, dizzy, most of these things, even the bad GI system.
    So yes, it's something pretty serious. I thought this was "normal", guys.

    I found that antihistamines did help me feel a bit more "alive" which threw me for a massive loop.

    Another is how when my GI system was normal for 3 days (just imagine it's always bad), I felt good. (For scope imagine that I have about 15 good feeling days a year).
    Good days=most of my symptoms are gone, even can breathe much better. Also, for whatever reason, there was a bunch of fuzzy white stuff (looked organic) that was in my #1 and #2. Not even kidding you, it was stuck in #2, not inside. I had never seen anything like it before.

    Anyway.

    Then two weeks back I found out about the MTHFR gene defect which made a ton of sense. I don't normally think I have something, but it basically could contribute to a lot of my issues--and also seems to correlate with asthma, speech delay (as a kid), and a weird one--vein in forehead (I have a massive one for some reason, rest of my skin is clear). It didn't help that the special B vitamins actually accompanied 4 of the best days I've had in, well...forever. I took it with NAC, Zinc (deficiency), and magnesium. What confused me was when later on it didn't quite have the effect...and even made my skin flake off a little? Like...my skin hasn't flaked in years, but the area underneath my eye flaked off, legit. What does that even indicate? And also it made me break out. So much for my skincare progress.

    I found that NAC, taken alone, actually had nearly the same effect and that genuinely when taken with the B vitamins they manage to perform wonderfully. Of course, the key is that I HAVE to get a decent sleep beforehand or the effect will be minimal (I'm beginning to suspect I have something like sleep apnea so me=breathing better is key).

    Honestly, on these two things, I had a brief period of time where I was so full of energy I felt like I was riding a rollercoaster in the best way possible, just sitting there. So much velocity inside of me. And, there was no anxiety, no come down.

    I'm not sure if this is like putting a bandaid on the issue OR if it's literally helping my body function correctly...but regardless I've tested it so much and I'm pretty sure NAC (and the methylated B vitamins) help me quite a bit.

    What's your take on it? I really would like to get to the bottom of why it inspires such an effect on me. NAC DOES thin mucus and help COPD (which I don't think I have but there's something messing with my lungs), so maybe that could be it but still. Whole body feels better. Mind feels sharper. I hear NAC is good for the mind but it feels odd that taking 1 (or 2, which has a huge longtime effect) helps so much.
     
  2. ljimbo423

    ljimbo423 Senior Member

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    NAC is converted to glutathione. Glutathione is called the bodies "master antioxidant" because it's so important to good health. Both a strong immune system and getting rid of toxins from the body, rely heavily on glutathione.

    Most people with CFS are low in glutathione and have high levels of oxidative stress, in part from low glutathione. I'm glad the NAC is working for you. Lowering toxins and oxidative stress levels in CFS is extremely important and this is what glutathione does.
     
  3. Wilderbessy

    Wilderbessy

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    What is the mechanics that leads CFS people to have low glutathione?

    I hope other people here do try NAC tbh. I just had 600mg too and it works, and I can't imagine how 1800 mg might work.
     
  4. Wishful

    Wishful Senior Member

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    I tried NAC a long time ago. It didn't do anything for me. I doubt that I took 600 mg though. Probably the recommended daily dosage, and likely double that just as an experiment.

    Please post whether it continues to work for you, or if it's like many supplements and stops working after a while.
     
  5. ljimbo423

    ljimbo423 Senior Member

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    I think there are several causes of low glutathione in ME/CFS. One is increased oxidative stress from immune system activation.

    Another is often methylation is impaired, which slows down the production of glutathione. Mitochondrial dysfunction also creates a lot of reactive oxygen species or oxidative stress, which uses up a lot of glutathione too.

    BTW, I take 1,200 mg of NAC a day and have for a long time. I'm quite sure it's helping, although I didn't feel the big improvement like you did. If I didn't think it was worth it though, I wouldn't keep buying it.:)
     
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  6. HowToEscape?

    HowToEscape? Senior Member

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    What is NAC, and how can you determine if you are deficient in it?
     
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  7. Wilderbessy

    Wilderbessy

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    Okay, update...I got a newsflash, NAC theory isn't foolproof. Found out through an unintentioned test...
    I went to school. This took an hour car ride. Car rides have always made me feel bad, but rather than only nauseous, they make me feel sick and fatigued for the rest of the day even when they're short--this was me as a kid too. Anyways 4 hours later (I was actually chilling btw at the electric fireplace for two hours) I feel bad but then I take a 2.5 hour bus ride home and I feel like a disaster B-movie.

    So..

    Lungs closed in, my nose and sinuses burn but no mucus, it's just harder to breathe thru, this incredible eye pain...IDK if it's normal for when people get 6 hours only, but it's like this pressured, sickly, feeling that sometimes happens (happens especially on the left side), and my eyes look extremely sucked in--I kid u not, they have that appearance it is horrific, and today the entire orbital looked black by the end of the day. Whole body hurts, random fribromyalgia, sense of stress, mind is foggy and weak. Chest burns for some reason and I'm hiccuping. The headache is unholy. Also, for some reason, incredibly dry eyes.
    I am thirsty but I drunk 2 liters. :/

    Even if I do get 7-10 hours sleep and go out and I have a similar schedule it happens.
    Like, guys. I can stay home and do cardio o r weight lifting or other stuff for an hour and while I'll feel horrible and I will have done more physically than I did outside, walk more on top of that, etc., I won't feel as close as that bad.

    I think NAC is good still, but man...guys, this is extremely frustrating. This is a set of symptoms I've always dealt with, but as I know from my good days, they're extremely unnatural. Like. Guys. People always say I look deathly ill or tired, but then say I look alive on my good days.
    What even is going on here? Does it seem like the MTHFR gene defect is panning out? Maybe the additional stress (toxic, chemical, emotional) is getting to me somehow? IDK, it's my one lead, and MTHFR does mean the body struggling to detox/relax right.

    What should I do from here? What do you guys think is going on?

    Also I don't think I'm NAC deficient. It's only a theory that I'm deficient in what it creates.
     
  8. ljimbo423

    ljimbo423 Senior Member

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    NAC is N-acetyl-l-cysteine. NAC is made from cysteine we get from our diet. I think a blood test would show if you are deficient in cysteine.
     
  9. Wilderbessy

    Wilderbessy

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    Aw, SOS, I think I need help. I don't necessarily want to make another thread unless I don't get any feedback here.

    Unfortunately things have gone south again now that I've been out twice this week. Pretty much within an hour in I feel like downright death, the area around my eyes darkens, I feel physically awful, sinuses feel bad for some reason but no sniffles, weird stomach ache (like today...I haven't even eaten anything but my lower stomach is experiencing some really bad tension and pain), disorientated. I think the NAC helps but for whatever reason it mainly only does if I stay home. (Staying home otherwise doesn't help)

    Okay so I have a specific question...it seems like my condition is heavily embodied by my eyes.
    Right now the eyelids feel very limp--it's hard keeping them open. It's not even a tired thing either there's just something wrong there. They appear sucked in like usual and it's hard to open them wide, so they droop there. They feel extremely tight, sore, with a bunch of tingly, sometimes even sharp pains, very dry, just very uncomfortable--the eyeballs do feel uncomfortable and very dry, but much of the pressure is around them. They don't seem that much resolved by stuff like Zyrtec. Sometimes when I feel bad - usually when I've been out - an extra eyelid line forms. This never happens if I feel good.

    My condition also seems to always worsen if I eat any food (exception seems to be beef) given that I already feel good.

    So...guys, when I feel good, it seems like stuff like cold skin, neuropathy, numbness, the weird eye thing, heavy headache, are all gone--sometimes I even look flushed. It's just me feeling very alive, sensual, and without any of the bodily burden. Why is this? Why does the circulation of my body seem affected by this? See, even people taking my blood have commented that my blood flow is very slow for whatever reason. :eek:
    Is there any way to artificially encourage my body to shake itself out of this state? And any ideas on why the interconnected systems of my body could be turtling like this? I mean, if I exercise, walk, etc. while I feel like this my condition worsens...but if I exercise outside of it, I feel great, and I don't get a burning/asthmatic chest.

    Also, guys, I have a zinc deficiency. Realized that my deficiency as tested by doc didn't change despite increasing dietary intake and supplementing--even the zinc "half moon" that's supposed to show up on nails isn't there for me...and I also realized that maybe it's a bad idea because of the zinc/copper ratio--I don't think I get enough copper to keep it normal. Man. This is just too complicated. I'm mentioning this because doesn't the zinc thing indicate my body isn't absorbing stuff properly? Like I said, it seemed like the days were my GI system was regular and good (3) I felt great too.
     
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  10. Wishful

    Wishful Senior Member

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    I think that beef is unlikely to be the only exception to food making you feel worse. I suggest trying meals with one ingredient for awhile, to see which foods make you feel worse, and how long it takes before the symptoms worsen. I developed a bad reaction to meats, but by experimenting, I found that it was the fatty acids, most likely palmitic acid. The responses to other meats led me to discover that the fatty acid to carnitine ratio was critical. Taking supplemental carnitine allowed me to enjoy meats again safely. After a while, I no longer needed the extra carnitine. If I hadn't paid careful attention to my diet and symptoms, and experimented with separate ingredients, I'd probably still be avoiding all meats.

    Can you taste the zinc supplements? That seems to be a simple test of whether you have enough in your system. I don't know how reliable of a test it is.
     
  11. Wilderbessy

    Wilderbessy

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    Thanks for the feedback Wishful! I wish there wasn't so many ratios to deal with in nutrition and etc. I'm probably gonna take my carnitine on a more consistent basis. On/off I have been taking it.

    I guess I can try the zinc; I'd assume it would have a taste though.
     
  12. Wishful

    Wishful Senior Member

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    With zinc, I've heard that if you have enough in your system, you get a strong taste. If you're deficient, you don't. As I said, I don't know how reliable that is, or if it's just nonsense. I've always tasted it.

    I just did a quick search. One peer-reviewed test of the zinc taste test found no correlation between taste and zinc levels.

    I agree abut the complexity of nutrition, cofactors, etc. Did the supplement I just tried fail because I wasn't deficient, or is it because I'm deficient in one of more cofactors, or because I took too little or too much? Is one of those bottles on the supplement shelf the magic cure for me? Too hard to know. It's hard to decide which to try to fix a deficiency when no one knows what is malfunctioning or why/how. Also, what one person claims works for them might not work for someone else. The two things that work reliably for me were purely accidental discoveries. Some of the supplements/drugs that I tried based on logic provided a small benefit for a short time; the rest did nothing or made my symptoms worse.

    Experimenting is useful. I've discovered things to avoid. I've assured myself that other people's 'wonder cures' didn't work for me. It's also let me feel that I'm actually doing something proactive about the disorder. Other people have found things that actually help them, even if it's just the placebo effect (not saying that all such claims are placebo). It's up to each of us to decide what is worth trying, and what isn't.
     
  13. xcell

    xcell Always looking for new knowledge and options!

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    NAC is helpful but could also help the viruses to multiply!
    Very interesting:
     

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