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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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    I wish you good luck. You are trying very hard and being very strong-willed and self-disciplined. Hope it pays off. :) (There doesn't seem to be a 'fingers crossed' emoticon.)
    Beyond likes this.
  2. Beyond

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

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    It pays off. Even nowadays that I am still sick I look better than the years of onset, specifically in the bloated face. Looking at photos I was quite swollen back then! Being haggard and underweight aside of course, those came with the disease... It feels like I go prettier as years go by :D I guess is a by-product of having an awfully healthy life, even with inflammed intestines and what not.

    I feel like a vegetable juice vampire.
    MeSci likes this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Do you sink your fangs into the veg and suck it dry? :lol:

    (You're not an aphid, are you?)
  4. Beyond

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

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    I googled it and... metaphorically yes, but physically no please! Ugly bugs lol
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  5. Beyond

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

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    I realised that in one supermarket in my city they carry classic probiotic yogurt, a fermented beverage that contains 180 billion of L.Casei per 1 L liter container, some L.Plantarum and also they sell 1 liter of goat milk with Bifido Bifidus, which I let ferment the other day with some leftover InulinFOS and yesterday drank (it fermented very quickly). Strange, malty and pretty unpleasant flavour but it has to carry billions and billions of Bifido (no other strains in the milk so no competition). Bifido Bifidus makes crappy yogurt, gastronomically speaking.

    So now I am supplementing with L. Bulgaricus, L.Casei, S. Thermophilus, L. Plantarum and tons of Bifido. Bifidus in fermented goat milk, three days one beverage, three days other. Pretty neat. Maybe I switch to just Bifido. Lets see how it goes.

    I have a good feeling about the Bifido beverage: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2011.04633.x/full
    Last edited: Feb 13, 2014
  6. Beyond

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

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    I have been taking as mentioned some fermented dairy almost everyday and gluten (whole ancient spelt) for a few days as well. Have started with some of the supps too, colostrum, propolis. Stopped fruit alltogether. My BM´s have worsened these last two days (in part because of lentil intake) and my nose eczema is back since a week. Obviously something I am doing is halting progress and I am vigilant. Have stopped the spelt for now and next will be the dairy if needed.

    I don´t seem to digest lentils (among other food items like plantains, apples) at all. Pretty shocking, they appear almost intact. I mean, not all of them, but a lot. Chunks (not that small I fear) of white mushroom as well. I just wonder, what can make your pancreas that useless?? It is crazy how doctors have dismissed me for years so now I am making photographs for the next appointment. I am sick of their crap (I am still sick BECAUSE of their crap indeed).

    Not feeling that bad, not much gut discomfort and I am partially functional so will start studying next week, 3 hours per day of class. I am just getting INSANE again trying to dillucidate WTF to do regarding diet. I just cannot drop grains too, but maybe I should. I wish I had someone to do the dieting thing for me, it is the hardest part.

    White rice or brown rice or no rice? Potatoes? No Potatoes?

    [​IMG]

    Also wondering about digestive enzymes. I have taken them before a couple of months and while stools where more digested I didn´t feel any damn improvement in anything else. Probablly I need to stick with them for long though.
    Last edited: Feb 21, 2014
  7. Beyond

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

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    No dairy, that´s crystal clear. My eczema has worsened a lot since taking fermented dairy. Ugh.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I know how frustrating it can be to have symptoms worsening again after improvement. I've had this a few times, but seem to have identified the causes. Essentially I went back to what I had been having before things worsened, and which I had tolerated well for months.

    My setbacks appear to have related variously to:

    Oats
    Buckwheat
    Chestnuts (high carb)
    Too much alcohol and/or cider instead of wine
    Too many nuts
    (possibly) sweet potatoes instead of potatoes
    (possibly) not enough leafy brassicas

    and of course overexertion.

    I definitely wouldn't resume having wheat or gluten!

    Can't think of anything else right now.

    EDIT - I think that once you get the gut healthy the rest will follow, in time. One thing that hasn't improved with me is physical energy, but I don't expect that to improve early, as it was one of the first things that appeared when I became ill, ditto chemical sensitivity. I theorise that, in general, the longer a problem has been present the longer it will take to fix. The gut seems to be an exception, being modified quite readily by getting the right microbiobal balance.

    Good luck, and try not to be too disheartened. You were making progress and you can do it again! :)
    Beyond likes this.
  9. Beyond

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

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    Now I am on Colostrum, Seacure and Propolis, dropped all dairy. My BM´s and discomfort in the belly, nose eczema are much improved again, even while I have started with fruit again (cannot live without that pleasure). Yeayyy.
    Violeta and AndyPandy like this.
  10. Beyond

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

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    Today I had the most perfect poop in months and my eczema will disappear soon. I must be doing something right! ;)

    Over time I expect my urticaria, sleep and energy/mood problems to improve sinficantly with gut healing.
    MeSci likes this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    My dermatitis has been resurfacing on and off lately. :( My left palm was quite flaky and itchy when I got up, but now it's almost completely smooth again. My gut has been good (BM-wise) so I don't know why that is happening. Maybe a delayed effect from the last time my gut got worse?

    Had a really weird night, with activity, discomfort and mild pain in lower gut (groin) at bedtime, accompanied by visual effects that I usually get when I have drunk a lot of alcohol - but I hadn't. Maybe I have been fermenting too much in my gut, or maybe my coleslaw had gone alcoholic! Everything looked bright, whether I had my eyes open or closed. With the unusual gut behaviour I worried that I might have gastro-enteritis, but after releasing some gas it felt OK again, but I still felt odd otherwise.

    Feel quite 'normal' (for ME) now, just tired as didn't sleep well, which is another thing that has returned. I have been overexerting (bad girl!) but it can be hard to avoid.
  12. Beyond

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

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    That´s very strange You did say that you use GSE as a natural antibiotic? It might be worth to try other things. I want to try Cat´s Claw and Olive Leaf Extract.

    I wouldn´t stop in the gut though, when you have a chronic problem/illness it tends to have various facets. So it´s up to everyone of us to find what are the other alternative treatments we might respond well too. Maybe methylation? Trying to improve sleep directly by any means? Attacking chronic infections if there is any? Even one blogger of here has improved with a breathing mask and there is also that guy that healed using kambo.

    Re the eczema... in my case it is caused or at least much worsened by certain foods. I have already identified dairy as a clear culprit, and gluten and eggs are too suspicious. So I would look at common allergens and trial stopping them.
    Last edited: Feb 28, 2014
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I only take short courses of GSE (1-2 weeks) when my gut becomes stubbornly worse. I am hoping this was just a blip, maybe due to my recent overexertion. Things have been generally good, apart from fatigue, weakness and mild PEM that I am fairly sure has been due to exertion over several days. I usually try to rest for a day between more-strenuous days, but I am having to do stuff in the garden during the brief dry days/hours before it starts raining again. I will need to start my spring plant sales soon (just 2-3 more years until I reach state pension age!).

    I haven't been eating, drinking or taking anything different, and don't have time or money to research or try anything complicated like methylation.

    I am, however, going to try having some ground flax seed every day, as it looks as though it has multiple beneficial properties: anti-inflammatory, sleep-facilitating, etc. I may start a thread on it if I can't find one, to see how much people use.
  14. Beyond

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

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    Yeah, adding some kind of beneficial dietary fiber is a good idea. I tried ground flax seed and it didn´t felt as it was helping me though. I would rather try Slippery Elm or even just Psylium now.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I actually get plenty of fibre, being a vegan! :D I'm really taking it for other reasons.
  16. Beyond

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

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    Positive update: taking Digest Ultimate and HCL pepsin (Dr Best) has made me regain normal stools, the kind I had when I was healthy. No or very rare food particles, formed and hard, almost no steatorrhea.

    Too bad they are slightly irritating so I am feeling some morning discomfort coming back. I might add Seacure again for that. At least now I am absorbing better my food.

    My eczema is very present though, obviously I am eating things that trigger the immune system, but I don´t care as I am intolerant to just too many foods and my diet is already very restricted. Just stopping potatoes means losing weight.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I get worsenings at times, and it is usually impossible to identify the cause. For some time recently I have been getting very numb fingers (maybe carpal tunnel syndrome?), and sometimes my whole hands, and also some arthralgia, which I didn't have before. I have thought about seeing the doctor but guess that he would not be able to recognise any connection with ME and might well misdiagnose it and want to give me some drug that could make things worse overall. So I am just enduring it for now. Sometimes new symptoms may indicate a recovery stage and they just have to be endured until they go away, but it's frustrating and sometimes worrying not knowing.

    I know that some recommend Vitamin B6 for such symptoms, but I actually found that B6 seemed to cause it for me once, as it developed when I was taking a supplement containing B6, and when I stopped it the numbness went away. I also realised recently that my Multivitamin and mineral supplement contains 6 times the recommended daily amount of B6 (and several times the RDA for some other nutrients) so now take it once a week instead of daily.

    I've also had looser stool and more urgency for a couple of days and thought about taking another course of grapefruit seed extract to deal with possible dysbiosis or overgrowth, but am expecting a new supplement to arrive soon which I ordered mainly for mood problems but which also increases cortisol and is anti-inflammatory - 5-HTP. I don't want to make any other changes until I see what that does, as it will then be even harder to know what is doing what!
    Last edited: Apr 16, 2014
  18. Beyond

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

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    Hey good luck with the 5-HTP. It caused me depersonalization!! Pretty interesting feeling, waking up in the middle of the night in panic because you don´t remember who or where you are (I have never got this after waking up).

    Overall I would not all consider my current state as a "worsening". I am much better than last year and lately I am even lifting weights. Obviously we are talking about a whole new level of vigor now.

    Only my sleep remains as a hellish obstacle between healing and continuing ill. I feel like I need to try adrenal treatment again for that, not forgetting to keep addressing my gut.
    MeSci likes this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Oh heck - I hope I don't get problems like that!

    Go easy on the exertion. That can make the gut leaky too.
  20. Beyond

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

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    Oh yeah, it has happened me before, starting to feel alive again and exercising too much. No pushing!!
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