Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Fecal Transplant DIYers

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by SB_1108, Feb 27, 2014.

  1. JohnSilver

    JohnSilver CFS Fighter

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    We have chatted before on this very thread above.. and I can assure you that I had more benefit noted from my first FMT from my 48 year old wife with some occasional arthritis than from the young 25 year old athletic male I made friends with in the remote jungles I went hiking where there are no doctors and people rarely get sick .. (I am not making up this story.. it is real).. so my theory is that the first FMT give me the largest boost of gut bacteria I had been missing for years.. and hence the biggest jump in energy within an hour of this first FMT.. subsequent FMTs from healthier people might have helped me, but not noticeably.

    Overall, over the years, I have kept trying different things and I usually see an almost immediate relief or benefit when something works. If I don't see the relief, then that may not be the problem is how I look at it. For me, after the first FMT, the next big thing was urine therapy. Other things that have helped are taking super-B complex. B-12 weekly shots, which I have replaced with B-12 daily sublingual; staying away from gluten and sugar. So if something doesn't work for me, I go try something else. Have you tried FMT after making your diet alkaline (raw fruits/ veges and almost no meat?). tried vege juice? Veg juicing gives me a nice energy boost as well! CFS is a problem with many heads.. I don't get hung up on 1 solution.. I keep moving.. Good luck my friend.
     
    pibee likes this.
  2. MaximilianKohler

    MaximilianKohler

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    You still didn't address the donor assessment issues I brought up.

    That sounds great, but that's not how you assess a donor's quality. We would also need to know more details about each procedure/handling. For instance, maybe you exposed the other donor's stools to more oxygen than your wife's stool.
     
  3. JohnSilver

    JohnSilver CFS Fighter

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    1. I have lived with my wife for 20+ years so I pretty much know everything about her. For the young athletic person, I stayed with for a few days, I had to make a judgement call, I could see his energy levels as we hiked in the jungles, I saw what he ate and how he could run up and down the cliffs with almost no effort. He was in a remote place with no sex life, no doctors, so I decided to ask him for donation... I had to come up with a wild story since I didn't want to gross him out on what I was about to do with his donation.. That was almost 6 weeks ago, and I have noted no problems. I really don't have time or energy to go through all the hoops and tests that doctors do, nor would my insurance cover it.. if this is going to work, it will work without all the elaborate tests and fancy labs.. if it doesn't work, then dysbiosis is not my current problem at hand.. that's how I look at it.

    2. I did let my donors know about oxygen exposure and made it clear that I need their donation as soon as it was produced. No problem there. If they pooped and I was not around, no worries, I don't need that batch. If I am around and they poop, give me that batch immediately. I did FMT pills and enema from the donated stool in all 3 scenarios approx 45 minutes of being produced by the donor. All mixing with clean saline solution was done by hand in a clean vessel to avoid too much oxygen mixing in as would be in case when using a blender. So no blender use in any of the FMTs. The 45 minutes is the amount of time it takes me to scramble to a isolated clean spot, hit the door, make the FMT pills and coat them with beeswax which I consumed within first 15-25 minutes and next 10-20 minutes to mix the remaining donation with saline solution and use it for enema. This is the fastest I can do this process without the fancy labs, so this timeline is what I have to deal with.

    Hope this helped?!
     
    pamojja likes this.
  4. MaximilianKohler

    MaximilianKohler

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    Thank you, the #2 is definitely helpful. But you still haven't commented on differences in stool. See the bristol stool chart for reference. I would be very surprised if all 3 donors had identical stools. As with your experience, I have also found there to be drastic differences in donor impact varying from donor to donor. "Young and fit" isn't enough.

    Beyond stool type, there are also other factors listed in the questionnaire I linked. I mostly agree with your comments on the usefulness (lack of) of various testing.

    So to confirm, there was basically little to no variation in procedure quality between the donors?
     
  5. JohnSilver

    JohnSilver CFS Fighter

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    @MaximilianKohler .. I think you are very detailed, thorough and methodical. I think my approach is more rough.. as in try it and see if it helps as long as the donor is "good enough" .. None of the donors were constipated, all had fairly healthy stools within reason.. since a lot depended on what and how much they had ate in last 24 hours..

    Yes, there was almost no variation in my process I outlined..

    If I needed more donors, there are forums on various internet sites e.g. Craigslist where I have considered posting a plea for a donation for the experiment I was going to do without divulging too much detail which can gross people out... There are off the shelf HIV tests I can complete within a few minutes from what I recall. I could offer extra payments to such healthy athletic individuals who would clear such a test .. some of them could show me proof of their fitness .e.g they run marathons, or are coaches in their leagues.. etc.. am I just saying that there are other options I could/ would have pursued to find more donors if I though I needed to pursue FMT from more individuals.. I am not sure if such tests would be enough to qualify all the health issues in your posted list, but I could / would have interviewed such people and paid them for their time before using their donation. A $100 could go a long way this way, than paying an expensive lab and doctor.. I not saying you should do this, I am saying I personally would have experimented more if I felt I needed to try more FMTs and I could not find more donors I knew personally .. I mean seriously there are millions of healthy people around us who poop every single day.. PM me if you need to talk privately.. we can skype or something I am sure.. don't overthink this.. good luck!
     
  6. MaximilianKohler

    MaximilianKohler

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    So I guess you don't want to comment on their stool then? I'm not seeing any more useful info that would help confirm the issue was not donor quality.

    I have tried craigslist - they remove that type of posting. I've tried multiple other forums and avenues as listed here: https://archive.is/gEw3u

    I've offered college athletes $1000+. There surely are millions of healthy people, but not ones who are willing to be donors.
     
  7. JohnSilver

    JohnSilver CFS Fighter

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    For $1500 I can fly myself to an international exotic remote location and get all the stuff done and have healthy people lined to be donors .. and have an exotic vacation thrown in.. just got to be creative enough!

    There was no quality issues with donor stool. If there was, I would have hooked up with another donor. You just have to get creative and sweet talk them into it without creeping them out. If I walked to a potential donor and said give me your poop, I want to ingest it or enema with it, it will blow their minds. Got to work your way into all this.
     
  8. MaximilianKohler

    MaximilianKohler

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    Tried the urine thing, seemed to make me worse if anything.
     
  9. JohnSilver

    JohnSilver CFS Fighter

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    Sorry to hear that.. urine therapy does address hormone imbalance for me from what I see.. and therefore helps reduce CFS symptoms significantly.. If I eat sugary chocolates, MSG, or other processed crap, my CFS & brain fog are right back with a vengeance .. so I have to be more careful with what I need to NOT put in my mouth as well as what I do.. it is real pain to watch people eat cookies, and cakes and ice creams and know that I need to baby my body so much to just feel normal..

    On FMT topic, at one point, I taken to Craiglist with an appeal to study stool samples and eating habits of healthy athletes for a payment of $25. I had 2 responses with photos of good bodied (ripped) athletes willing to help out for this in Chicago area. I never went through with this study.. If you were in Chicago, I could share their contact info.. PM me if you need to chat more on this topic.. you don't need to shell out $1000 or anything like that for poop which these healthy people are flushing away everyday.. in fact offering them too much and giving them too much detail might be freaking them out..
     
    panckage likes this.
  10. Hip

    Hip Senior Member

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    I missed your above answer back in 2017, but in any case, that's not the way the ME/CFS scale of: mild, moderate and severe works.

    Mild, moderate and severe are levels of ME/CFS illness severity. Click on the link to see a description of these levels.

    So I was asking where you are on this ME/CFS scale before bacteriotherapy, and where you move up to on the scale after bacteriotherapy (even if this move up the scale only lasts for a few months before the benefits of bacteriotherapy wear off again).

    So for example, if you have moderate ME/CFS, and a treatment improves your ME/CFS so that you move up to having only mild ME/CFS, then that is a 1-level improvement on the scale.

    Do you find bacteriotherapy provides a 1-level improvement, or is the improvement a little less than that?
     
  11. MaximilianKohler

    MaximilianKohler

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    Oh sorry. My fatigue varies drastically depending on dietary and supplemental (phages & Jarrow's s.boulardii) changes. But moderate to severe for sure.

    The benefits from a single FMT were very apparent (IE: switching me from severe to moderate), but didn't last long (few days maybe).
     
  12. Hip

    Hip Senior Member

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    Really, as short as that? I read that Dr Kenny De Meirleir found that the benefits of bacteriotherapy in his ME/CFS patients would last for around 10 weeks, after which the positive effects would start to disappear.

    But a few days seems a very short time.


    Are you also looking at viral infections, with the view to treating those? Enterovirus loves infecting the digestive tract.
     
  13. MaximilianKohler

    MaximilianKohler

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    It depends on so many different factors. Firstly it's important how many FMTs he did with each patient. Secondly there's significant patient to patient differences, and of course donor quality.

    With me it felt like taking 1 pill of an antibiotic when you're supposed to take a 3x/day 2 week course. Being that phages have similar effects to antibiotics it makes sense. I can see how people with just IBS can be nearly cured with just 1 infusion. I have many problems beyond CFS, so I'm one of the more difficult to treat cases I think.

    I don't know much about treating viruses except for what's in the "treatment" section of this website, and from some stuff you PM'd me.

    My issues are largely bile metabolism: https://www.reddit.com/r/HumanMicrobiome/wiki/bile and "too few phages" which means anything that feeds bacteria (prebiotics, etc.) greatly harm me since there is nothing keeping them in check.

    Jarrow's s.boulardii seems to have very significant benefits for me. I don't recall any studies showing it helps with intestinal permeability, but it certainly seems to help with that.
     
    sb4 likes this.

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