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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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My Gut Crusade

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Beyond, Oct 19, 2012.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Sorry to hear this, and especially about the strange mood.

    How are you taking coconut oil? I love it so use it for all my uses of oil/fat, but maybe if you fry with it you won't notice the taste so much?

    Yes, it is really challenging to be experimenting blindly (in the sense that we don't know what's happening in our bodies) and especially with brain fog. I find it very frustrating. If I could afford it I would be monitoring my physiological state regularly to see if things are doing what they should, whether I need to change doses and other things, but all I can monitor is blood pressure, blood glucose and how things look and feel.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I also meant to say, look out for additives (e.g.preservatives) in aloe vera juice.
    Beyond likes this.
  3. Beyond

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

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    Ugh no thanks, I fried some months ago (that´s how long that bottle of coconut oil has been around lol) a hamburguer and is not something I plan to repeat - ever. I will take it with a spoon and man up haha

    I dont know. It might be that the methylfolate, methylcobalamin etc taken sublingually are lifting my fog and letting me see how desperate my situation is. Or maybe is just a side effect of them or something else I am taking. Last time I took active B-vitamins I also started to be more social and humoristic but ended with odd impulses of agression and deep psychological malaise. These methylation supps seem to be key for mental disorders IMO.
    Crux likes this.
  4. Beyond

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

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    I bought Seacure, Propolis Y.S. and Jarrow EPS 25 billion. My intestines aren´t that bad now, I only eat white rice, meat and fish, juice veggies and take apples. I am starting to add more things.

    Vitamin C powder is slightly irritating and very acidic, but I am passing normal, hard stools everyday. Something is working, but I have yet to see actual improvements in the way I sleep, function and just... feel.
    Last edited: Dec 27, 2013
  5. Beyond

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

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    Something that I am doing or taking is having a big effect in my digestion, maybe the adrenal protocol. Today I was the most constipated in a year. Or should I say the only time I´ve been constipated in a year. This is a change, and probably positive. Intestinal inflammation only appears if I eat something that I shouldn´t or if my gut is pressed or touched, which includes sometimes when doing stretches/yoga poses etc.
  6. Beyond

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

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    Nah it seems that was simply the effect of avoiding some food intolerances. But who can eat a diet of only a couple of things? Today I ate bananas and potatoes and sure enough I got soft stools again and the distinct feeling of lesion or lesions in what I have determined to be my ileum. Whatever is brewing there for me, I am not letting it progress with liters and liters of raw veggie juice and this ridiculously restricted diet from the depths of hell. Soon propolis, Seacure and the probiotic will put the balance to my side finally. Crohn´s Disease Begone!

  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I like the fighting spirit! I wonder whether some pain and abnormal stools may occur during the healing process? And maybe some toxins from bacterial die-off? I tend to stick to regimes for at least a few days when I get adverse effects in case they are just aspects of stages of healing.

    As an oldie I guess I'm more patient than impetuous youngsters!

    I wish you luck on your journey to wellness, but don't be discouraged too much by setbacks.
  8. Beyond

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

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    I am sticking hey! I´ve been in an moderately hypoallergenic diet for months now and years intermittently. And I won´t stop taking these supplements, in any case I am better than what I was without them, that´s for sure. It is just that some foods aggravate my problems. I need to avoid them consistently, this will be as important as taking supplements or probiotics. And also rotate foods. Very hard when you are depressed and tired but I´ll do my best.
    MeSci likes this.
  9. Beyond

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

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    I think my new favourite supplement is SeaCure. It smells pretty foul but from the first dose it lessened my pain. Together with Propolis and Jarrow EPS I am having solid and well formed bowel movements almost everyday (have slight constipation now). Still have a long way to go though, at times the discomfort becomes apparent again, especially if I indulge with say, apples, bananas or crisps.

    Theorically the Hypericum I am taking also helps an inflammed gut.

    My diet is truly a challenge for the most patient, the basic staple is white rice and meat and fish. I will take leaky gut supplements for literally at least a year, as this needs long term treatment. Next I want to try/add Colostrum and Scullcap tea, which also helps with sleep.

    My family comments that I have improved psychologically recently. You know how people are, they think all of this is psychological. I have found that I feel less trapped and panicked and I think more clearly about my situation, what brought me here and what can take me out. Sleep is still horrible, energy is 4,5 of 10, I don´t have headaches.
    Hanna, redrachel76 and Thinktank like this.
  10. Thinktank

    Thinktank Senior Member

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  11. Beyond

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

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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Can you get away with any apples at all? Some people say that they are OK with one a day but not more. I think this may be the case for me.

    I think that leaky-gut supplements may need to at least be on hand long-term, as when we make mistakes and bowel movements and other symptoms get bad again, the gut is probably getting leaky again. If it's the source of autoimmunity it will need to be tackled very quickly each time to make sure it doesn't start being triggered again, especially if the autoimmune activity hasn't yet died down (and this can take months or even years, I think).

    I am taking all my supplements continuously except the grapefruit seed extract, which I just repeat when things seem to be going wrong again.

    Re psychological improvements, I became much less anxious as my other symptoms improved, so I think that my lifelong anxiety had a physical cause all along.
  13. Beyond

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

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    I don´t know. This morning I had one Golden large and it gave me the typical inflammation around the belly button despite of the supplements. Probably is the apple pectin, or maybe all the sugar, which has been a problem for me in the past. If I have to stop apples I´ll do it. But I have tried in the past to give up fruit and I couldn´t, I fear I am addicted!
    Last edited: Jan 16, 2014
  14. Beyond

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

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    It seems that it was the peel/fiber of the apples what bothered my inflammed intestines. I casually saw in an article for Crohn´s that they should peel the fruit, I tried that and got no discomfort. Bye bye apple pectin and flavonoids! For now... I will avoid all the rough foods while I heal.
    MeSci likes this.
  15. Beyond

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

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    Doing good, BM´s flip flop from loose to almost normal depending of the amount of fruit consumed during the day. Going to add Colostrum and Resistant Starch soon. Ahh I can feel that I am in the right path.

    Energy is way up (keep in mind I am taking a couple of adrenal supplements sublingually), almost no gut discomfort, sleep is better? At least today it is, 5 hours of sleep rarely make me feel this refreshed. Mood is so so, obviously it has lifted from suicidal lol Mood is good given the circumstances of my life.
    Thinktank likes this.
  16. Beyond

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

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    Note for those with intestinal inflammation/leaky gut: dried fruit and nuts will give you looser stools and, if taken enthuastically as I did some days ago, downright diarreah. So, believe it when in these seemingly quack naturopathic they advise you to avoid high glycemic fruit, dried fruit or nuts when having "leaky gut". Cashews and dried figs, although a luxury I enjoyed, were my perdition! Now I am down to 61 kg.
    Thinktank likes this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    :( Nuts are my go-to snack food. :cry: I think I may be eating too many at the moment as winter makes me hungrier. I was OK before when I was eating nuts, but I may have increased my intake.

    I don't think that naturopaths are necessarily quacks. Some probably are, but some are probably good.
  18. Beyond

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

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    Yah that´s why I added "seemingly". The real quacks are the ordinary doctors in my experience! Well, and even more the New Age healers of any sort. Those are the master quacks.

    Re nuts. I would ditch them. Personally I have found them to be very hard to digest and definitely inflammatory.
    Last edited: Jan 29, 2014
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I am just going to reduce my nut intake to the kind of levels I had before a recent increase and a recent deterioration in gut function and associated symptoms. As a vegan I have limited options for low-carb snacks. I had made a number of dietary changes prior to the deterioration and am trying to identify them and correct them.

    What do you have for snacks?
  20. Mij

    Mij Senior Member

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    Beyond, have you tried soaking the nuts (and seeds) overnight? I've been doing this for years, soaking gets rid of an enzyme that prevents us from digesting and absorbing the nutrients properly.

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