Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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. bombsh3ll

    bombsh3ll Senior Member

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    This is both funny and sad in equal measure, what we will try to improve our situation.

    Here I am - but none of the above prevented me from getting ill unfortunately & I doubt anyone would want to eat mine ;)

    Who knew I was sitting on such a prized resource before I became ill though!
     
  2. adreno

    adreno PR activist

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    You never took antibiotics before getting ill?
     
  3. MaximilianKohler

    MaximilianKohler

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    I don't think I did either. All the causes of dysbiosis are not yet known. But there are many.
     
    ljimbo423 likes this.
  4. bombsh3ll

    bombsh3ll Senior Member

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    Honestly the only time I ever remember having antibiotics was as a younger adult when I had appendicitis. They were IV. I never had any as a child. My parents were into free range, organic etc & I never went to a hospital or a doctor growing up other than when visiting elderly relatives in hospital. Other than that I never really suffered from infections other than the odd viral cough or cold etc.

    I really don't believe antibiotics had any role in my developing ME other than very indirectly as in; appendicitis initially treated conservatively with antibiotics, led to delayed surgery, abscess and peritonitis by the time of laparotomy, led to tubal infertility, led to desperation to have another child & lots of IVF (whereas I may not have been too bothered had I remained fertile) led to pregnancy, had massive obstetric haemorrhage, caused brain hypoxia & possible pituitary dysfunction, also transfused 20 units of blood. It is the latter two that I suspect may be implicated in my developing ME 14 months after my daughter was born. Of course I will never be able to prove this it is just a hunch, & even if so, I don't regret having her.

    Come to think of it, you may want to add never had a blood transfusion to your donor criteria. But yes, prior to that I could have sold my number twos for £££ had I only known!
     
  5. JohnSilver

    JohnSilver CFS Fighter

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    I have taken the leap and finally done it .. http://thepowerofpoop.com/about/about-fecal-transplant/
    Using my spouse as a donor. I have seen immediate (within 2 hours) relief of my brain fog and about 60% relief in physical fatigue. In last 7 years of battling with CFS & brain fog this has been the best present my spouse could have given me. Note that I had spent significant time and efforts in making sure that there was no (or almost no inflammation) .. see Briggs protocol.
     
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  6. MaximilianKohler

    MaximilianKohler

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    Do you plan to continue doing them? In my case 1 time was not enough, and the recent ASU autism FMT study went daily for 10 weeks.
     
  7. perrier

    perrier Senior Member

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    Please say a little about Briggs protocol

    We are planning to try this

    But my daughter has major inflammation
     
  8. JohnSilver

    JohnSilver CFS Fighter

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    I didn't follow Briggs' protocol to the tee.. I did listen to my own body and over last few years of suffering and experiments I have learned to stay away from allergenic foods like dairy, nuts, gluten, and most recently sulfites .. I was so mad when I keep dealing with body aches and finally isolated shredded coconut from Bob's red mill to be the culprit.. but I love fresh brown coconuts.. the packet didn't saw anything about sulfites .. turns out they don't have to.. per FDA as long as the sulfites are under 10ppm, listing is not required.. @#$ Just great! .. Anyway, I am so tuned to my body and keep a detailed log and I can see when my body is dealing with inflammation..

    Next is gut wall healing.. I have learned to love my body and feed it green juices, raw vegan food with some keto genic diet thrown in.. I have steered clear of sugar, candy, all preservatives for years.. anyway .. none of this stuff helped cure me.. I finally reached the conclusion based on my symptoms that I have a gut bacteria malfunction of the ultimate kind from all the antibiotics.. So I took the courage to explain this to my spouse .. I was expecting her to walk out on me since she is quite sick of my health issues year after year.. but maybe I prefaced it with I think I am dying .. of which I was quite convinced since I had very low energy and 50% days with brain fog for years and years.. and nothing I tried was helping..

    She agreed to donate to try my FMT at home.. I had nothing to lose... By wife is not an athlete or anything, but she has always hated taking pills (read antibiotics).. great .. all the years I was sick of her not taking vitamins, or prescription pills might actually help.. !

    So I took the plunge .. today is my 4th day after FMT and most of symptoms like low energy, brain fog and dizziness while standing up were gone within 2 hours of doing FMT.. I am still smiling .. I am not how long this stuff will last.. but so far I am tickled! This is the best present she has ever given me! poop.. literally!
     
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  9. JohnSilver

    JohnSilver CFS Fighter

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    I suppose this could (not sure) depend on a few factors:
    1. the quality of donor & how long you can hold the FMT donation in your body - I went 14 hours before I had to finally go.
    2. have you addressed other issues? I got my root canal tooth removed completely ; I replaced any metalic fillings in my teeth.
    3. I was in back to back detoxes for last few years with bentonite, green juices, spirulina, ALA
    4. Keep detailed log of foods you eat and how you feel the next day .. usually food allergies hit you next day.. review FODMAP diet..
     
  10. JohnSilver

    JohnSilver CFS Fighter

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    Not sure .. Since I am not stuck doing this through a doctor.. I plan to monitor myself for a few days.. I am trying to convince another person I know for FMT donation.. let's see.. I have seen that it becomes hard to isolate offenders when I start too many new vitamins / pills .. I am treating FMT the same way.. if I get too many too fast, I will not know which donors were bad and which ones helped me most..
     
  11. MaximilianKohler

    MaximilianKohler

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    Thanks for the info JohnSilver. I have been trying to figure out what makes a good or bad donor myself, and thought I was onto something until the most recent donor I tried. I would be extremely curious and grateful if you would take a look at the questionnaire here: https://www.reddit.com/r/HumanMicrobiome/wiki/index#wiki_fecal_microbiota_transplants_.28fmt.29.3A and share with us as much of the answers about your effective donor as you're comfortable with. In particular their age, lifetime antibiotic usage, and their stool characteristics.

    Thanks a lot!
     
  12. JohnSilver

    JohnSilver CFS Fighter

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    My wife's age is about 48. Last antibiotic use was amoxicillin - 1 pill a day for about a week course about a month prior to FMT donation. Over course of last 20 years, she might have taken 1 round of antibiotics every 2-3 years. I am not aware of her ever taking Cipro or other fluoroquinolones which are I believe are equivalent of dumping nukes in our bodies.. (see https://thencamemichael.com/) .. either way, as long as she eats healthy food, she is energetic, and had no symptoms like me - i.e. she had no brain fog, complete energy collapse of majority of days (CFS) or dizziness while standing up (this was occasional for me - and I believe indicative of my gut microbiome not absorbing B12 from food). Her donated stool was type-3 on bristol chart.

    She does experience temporary fatigue after consuming gluten and highly processed foods, which clears up after 1-2 days.. vs. mine which is persistent for weeks/ months/ years.

    So by no means she is a perfect donor.. but it was easy access for me and worth a shot..
     
  13. MaximilianKohler

    MaximilianKohler

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    Wow, that's really bizarre and puzzling. That's way more (and more recent) antibiotics, and much older than the current donor I'm trying with that isn't working. My donor's stool is also very ideal. Type 1 & 2 on the bristol stool chart, which is very good for me since I have chronic diarrhea.
     
  14. JohnSilver

    JohnSilver CFS Fighter

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    The only thing I can think of at the moment is that I spent a lot many years healing my body in other ways.. detox; green juices; I even was doing high doses of B-complex/ B-12 IM shots; ALA/ Malic Acid; Also I suspected parasites so I did a ivermectin (from amazon) cleanse which helped; I ate NO SUGAR ; borrowed from the ALKALINE diet; GAPS, then FODMAP diets.. no dairy, nuts, gluten or sulfites (no beer/ alcohol/ preservatives) .. you could look up Dr. Justin on youtube from texas who focuses on gut cleansing.. I believe my body was healed in every way I can think of .. just the gut bacteria was missing .. at least I hope that is the case .. since I am only 5 days past my FMT treatment and my last 5 years of symptoms have all but disappeared.. Of course i had some streaks of good days in last 5 years only to have a relapse .. but this time it feels better than others and seems more persistent.. Anyway, unless our body is more habitable the new microbiome can't take hold.. have you checked your 6am Ph level (urine test?) .. http://www.perque.com/lifestyle/self-tests/first-morning-ph/ ?
     
    sb4 likes this.
  15. knackers323

    knackers323 Senior Member

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    Hello
    @MaximilianKohler
    Not sure how easy they are to get but have you looked at the commercially available fmt pills?

    @JohnSilver have you held your gains?
     
    Last edited: Dec 17, 2017
  16. MaximilianKohler

    MaximilianKohler

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    They're not commercially available. They're only given for c.diff. There's one Florida clinic that refers you directly to a donor for other things, but I've been unable to verify high processing standards, they might only have 1 good donor, and that donor seems flighty and as of now are not willing to sell the capsules.
     
  17. JohnSilver

    JohnSilver CFS Fighter

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    Update - I have done 2 more FMTs & another therapy I will mention below.
    As noted above my first FMT was from my 48 year old wife. This had astounding results and I consider myself considerably healed after this first treatment. - Did enema on the first round. Did a 2nd round with enema and FMT pill which added no noticeable improvement.
    About 2 months later, my 2nd FMT was from my daughter, teenager, excellent health. No noticeable improvement noted. I still had some CFS remaining at this point, but I started to doubt that after first FMT from the wife, dysbiosis was no longer the issue or perhaps I needed a healthy young male athlete as a donor.
    Another 1 month later, I was a able to make a young male athlete friend and got him to donate his poop. Again, no noticeable improvement was noted. Dysbiosis ruled out as no longer the current cause.
    -
    Ok, now for the surprise therapy - Googling around I ran into a write-up from a frustrated woman on curezone forum who mentioned stumbling on urine therapy. Difference is you use your own urine as your body is producing hormones and chemicals for your body, much of which are getting dumped out in the urine, so by reingesting urine, it cures some of this leakage issue... I can't say this makes a whole lot of sense, but I was desperate and reading this woman's blog, I decided I have nothing to lose, so one afternoon 2 months ago, I decided to experiment with 1/2 cup of my urine and went for it.. The results were astonishing again.. as good as my first FMT .. which cured 1/2 of my CFS, the other 1/2 of my CFS was cured by drinking my urine .. yes I need to drink this everyday.. I drink all the urine I produce till about 3pm.. After that I switch to water.. if I drink urine past 4pm, it seems to act like caffeine .. I end with too much energy and I have trouble sleeping..
     
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  18. sb4

    sb4 Senior Member

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    @JohnSilver Could the urine therapy work by B vitamins, some people require higher doses of these when ill with CFS. You are giving them more time in blood when recycle urine...
     
  19. MaximilianKohler

    MaximilianKohler

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    Very interesting about the urine, never heard about that before. But I don't think you can rule out gut dysbiosis/FMT based on the info you presented here. We need way more info about the donors in order to assess how high quality they are. I posted links before, but from my experience some of the main factors are stool comp and lifetime antibiotic usage. http://freetexthost.com/5wxb3epoun
     
  20. JohnSilver

    JohnSilver CFS Fighter

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    When I double my intake of vitamin B, and I do not do UT (urine therapy), I do not see the same improvement as I do when I do UT. In fact, I can stop vitamin B now for a couple of days in a row, and just continue with UT and see better results. I believe the theory that makes sense to me is that adrenals are producing natural hormones which body flushes out to urine over time, by recycling these hormones back in, for people like me suffering from CFS, it could be like taking natural hormone supplements, except these are produced by your own body. Only 1 time I have noted a headache from UT on a day when I was already feeling quite energetic to begin with..
     
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