The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Why probiotics can be harmful (amines!)!

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by guest, Jun 12, 2010.

  1. Miles


    Hey guys, I need some help.

    Foreword: I have a long history of health-problems, which were caused by neglect and terrible health-advice from my parents and Doctors when I was a child; which I learnt to manage with a healthy diet/lifestyle.

    Body: I had gut dysbiosis issues, including loose stools, so I started making probiotic yoghurt to try and help. When I took the probiotic yoghurt(made with store-bought organic probiotic yoghurt as starter), it made my stools hard and dark, and I was happy about this. The yoghurt was also delicious =) However... Before I would have these hard-dark stools, I would get brain-fog, as in I would feel a little out of it, as I could feel the stool moving to the departure lounge so to speak; then, after the flight left(I defecated) the brain-fog would disappear. I was just so happy to have solid stools that I was not concerned about the fog. Also, after having the yoghurt in larger quantities, I would get some mucus farts, as in I would fart and mucus would come out my ass... Anyway, this stool-hardening(and brain-fog) effect would only occur maybe within 24hrs of having the yoghurt, as a guess, and after that my stools would become loose again if I didn't have more yoghurt.

    So... I wanted something more powerful that would have a lasting effect, so I got some kefir grains off of eBay from a reputable seller. They worked and the kefir tasted great. After drinking the kefir, I would get the same brain-fog effect, but now soon after drinking it. I thought "This is great" because I associated the brain-fog with solid stools. To clarify, the brain-fog is kind of like being tipsy or something, I guess, but I don't really know because I've never been tipsy from alcoholic beverages... The kefir would settle my nausea that I used to get, and would lead to hard-stools as the yoghurt had done. So, I kept taking the kefir, and increasing the quantity, so I was having 1L a day or so. Quite soon, maybe within a week or two, I began to have the brain-fog constantly, all the time... My stools were also solid all the time, but I hadn't stopped consuming the kefir anyway at this point. I also developed strange wrinkles on the palm-side of the fingers of my right hand; and the nail-side of the fingers looked kind of like a healed severe burn victim or an old person, like tight plastic-wrap. This skin condition got worse the more kefir I drank, and eased off the less I drank. I would also get these mucus farts after drinking kefir as I did after consuming the yoghurt. I also had developed acid reflux. So, I decreased the quantity of kefir I was drinking and eventually stopped drinking it entirely.

    I've now been off the kefir for several months. My stools are still solid, I still have the brain-fog constantly, and I still have the strange skin condition on my right hand...

    The brain-fog is constant, though it seems to get worse after eating. So, I'm now trying to take steps to end the brain fog. I've started following 'The Perfect Health Diet'. This has not reduced the brain-fog(noticeably), but it has reduced the acid reflux. I also tried taking herbal tisanes like barberry bark; and using ginger, garlic, chilli and turmeric with my food(hoping the anti-microbial effect would help me). This didn't help. I also tried drinking lemon/lime water with ascorbic acid(just cuz why not). This didn't help, but it did cause more mucus farts(consumption of acid(yoghurt, kefir, lemon/lime/ascorbic acid) -> mucus farts).... I have also been eating this 'perfect health diet' with a meal in the morning and the evening and fasting in between. My thirst increased, and when I would drink to sate my thirst, I would drink like 4L of water... This did very slightly decrease my brain-fog, but it also made my kidneys hurt, and I was pissing all day...

    'Perfect health diet', as I'm eating it, is 450g starchy veg(potatoes/sweet potatoes e.g.); 450g sucrose roots(e.g. carrots, beets); green leafy veg, butter, salt/seasoning to taste; and like 200-450g fatty meat/fish/eggs/cheese per day; spread between two meals.

    The latest thing I am trying now, as of today, is I am going to cut out the starch/sucrose vegetables, and just eat the green leafy vegetables and the meat... I am hoping this will starve out the possible excess bacteria and give my gut a chance to heal so that when I start eating the starch/sucrose again the bacterial toxins will not penetrate my intestinal lining; or maybe that the bacteria will balance out more appropriately. Kefir bacteria are feeding off of sugar, and the green leafy vegetables should provide mostly just fibre; I will only be taking ~100-200g per day of these, just to get vitamin c and some other nutrients, as well as the fibre.

    I've been to the Doctor, hoping to get tests for exactly what's causing the brain-fog. I know, with 100% certainty, that the spark causing the brain-fog was the consumption of the kefir. All I don't know is exactly what all the complex interactions/mechanisms are which mean that me taking kefir has caused me to have brain-fog. However, the Doctor wants to think my brain-fog is caused by anxiety >.> Anyway, just going through the motions with that. I have an appointment with a mental-health nurse, 1 hour long. I'm going to bring with me as much documentation/links etc showing how digestive problems e.g. infection/dysbiosis/leaky gut can lead to brain-fog symptoms. If any of you can suggest any such documentation/articles etc, I would be most grateful.


    Wayne likes this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    Happy to be of service, Miles! :)

    and if you do have anxiety it could be due to excessive adrenaline resulting from ME. I feel that I have reduced this significantly myself through a low-grain/low-sugar gluten-free diet plus supplements and careful pacing.

    This paper


    reports significant improvement in ME/CFS patients from a leaky-gut diet plus supplements.

    There is a good thread in Phoenix Rising here:

    and some others, I think. You should find them if you search the forums using the search box.
  3. Sparrowhawk

    Sparrowhawk Senior Member

    West Coast USA
    My PCP told me that he saw two of his AIDS patients develop sepsis from probiotics if their gut was compromised. When I asked him to give me VSL3, he refused. Made me really rethink my probiotic intake. Perhaps one does not need 45B units, perhaps something far less. One more variable in so many variables to try to make sense of...
    Wayne and Little Bluestem like this.
  4. Thinktank

    Thinktank Senior Member

    Certain strains of probiotics might also cause problems in histamine-intolerant people. If i remember well the popular L. Casei or paracasei, reuteri and a few others increase histamine from the amino acid histidine.

    I've been having mast cell activation syndrome and histamine intolerance-like symptoms in the last few months. I take two sachets of VSL #3 daily and always notice some spaced out feeling and anxiety within 30 minutes after ingestion.
    BUT it does cool down inflammation, completely cleared my acne and i now have solid formed stools.

    I think the best thing to do is to do some research on which probiotics might help your specific condition and then have it custom manufactured or buy each single strain separately.
    Ninan and Wayne like this.
  5. Sparrowhawk

    Sparrowhawk Senior Member

    West Coast USA
    Thinktank Wow, there's a custom manufacturer of probiotics? Do you hvae a ref?

    I tried sauerkraut and while it was great to have a new taste for my very limited palate, it seemed over the course of the last two months to make the IBSD worse. That means I don't need that particular type of probiotic. Not sure how I identify what I do need, but I'm still thinking either VSL4 or Theralac (not Threelac, which I know is different).
  6. lch1

    lch1 A New Day, Every Day!

    Mid Atlantic area, USA
    I've been in a crisis for 5 weeks following acute bronchitis and head cold. At this point, I am spiking temperatures and feel worse than I have ever felt. I am beginning to think that this was triggered by starting probiotics, and I suspect that there is some danger in taking them when in a vulnerable state.

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