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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Fecal Transplants

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Misfit Toy, Mar 20, 2013.

  1. SickOfSickness

    SickOfSickness Senior Member

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  2. Misfit Toy

    Misfit Toy Senior Member

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    Are people on here really serious about drinking poop? OMG. I want to jump ship. To me, that is the lowest form to getting better that I would ever NOT DO. I am now nauseous.
     
    heapsreal likes this.
  3. maryb

    maryb iherb code TAK122

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    Spitfire - this is serious stuff - it is the best method for treating C-diff of course it given by enema but it works and g/enterologists all over the world are using it.
     
  4. Misfit Toy

    Misfit Toy Senior Member

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    Mary, I agree but I found this on the link that sickofsickness put up and it's me to a T.



    "If you have been sick for a long time it is quite likely that you have few if any friends left. Family members are often not an option due to health problems that make them too risky. In addition to this the donor has to be willing, able and geographically close.

    Unfortunately we do not yet have Donor Banks to call upon, so below are some ideas on how to find and approach a donor. All of them will require you moving out of your comfort zone, swallowing your embarrassment and summoning personal courage at a time in your life when you feel sick and desperate. Like it or not, personal challenges and facing the unknown are part of the involuntary journey we find ourselves on."

    My mother has diverticulitis and is 83 and my other living relatives are much older and out of state. Plane rides away. They would think I WAS/AM NUTS. My friends, the few that I have, would never ever do this. They would think I was nuts. So, my answer is...as great a treatment it is, the hoops you have to jump through are too much "for me." I would love to do it, but why is everything so hard? Can't there be a clinic where there is donated poo? I mean come on....how many here could really ask someone, "Can you donate your poop to me since my bacteria in my intestine is not right?"

    I find that for our disease, above any other; the lengths that we have to go to, the amount of research that we have to do and we basically have to learn biochemistry in order to understand phase liver 2, methylating and the ratios between zinc and copper and how much we should take.. and all of this stuff stresses me out and makes me sicker.

    I am not wanting to be ill and I so want to get better, but honestly just thinking about finding a fecal donor, making sure that their poop is okay, that I have C-diff and finding a doctor who does this....that is so much to do and just knowing that makes me want to go to bed.

    I am not being a downer, but stating a fact and I am sure that there are a lot of people on here that are too sick to even consider this idea. They are bed bound, have such cognitive difficulty, etc.

    I am so glad for all of the info, but I will hangout and wait for something a little bit easier, a little less work and expense to come my way.
     
    MishMash likes this.
  5. SickOfSickness

    SickOfSickness Senior Member

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    Finding the donor and getting the donor checked is one part. The site is recommending the recipient get many tests run too.

    If someone has a healthy donor and wants to do it, the clinic and travel seems cost prohibitive and tiring. Patients are doing it every day for 2 weeks or more, so that makes the clinic bills high. It is not like 1 or 2 visits. They could do the at home method but it appears the bacteria are not going to reach the upper parts of the intestine and be as effective.
     
  6. MishMash

    MishMash *****

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    Dr. Klimas, for all the negative things I've said about her practice and theories, IS AN ABSOLUTE NINJA when it comes to lab testing. In fact, she is board certified in "laboratory testing." She is a absolutely obssessive that her lab handles the specimens properly, and the specimens are tested accordingly. She pays unannounced visits to the lab to see how things are going. She is a zen goddess at this stuff.

    So, if there is any researcher/physician in this country who could examine and test a person's poop for Hep C, c.diff, and a hundred other pathogens, it would be her. Which is one of the reason I was so disappointed in her jejeune answer when I asked about FMT. I seriously got the impression she didn't care. I don't think the problem with our specialist guru docs is inability or stupidity; it is an INABILITY TO READ CURRENT LITERATURE AND THINK OUTSIDE THE BOX.
     
    aimossy likes this.
  7. Misfit Toy

    Misfit Toy Senior Member

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    Cheney thinks outside the box MishMash doesn't he? I used to be up on all of what these docs were thinking, but I have fallen out on this. I know a lot of people have gone to see her and some are really disappointed or they think she is great but something at some point is lacking.

    Cheney was into stem cells and glutathione and all of that stuff for awhile. Yes, many don't think outside the box. My doc does actually, but his hands are tied and he is too freaking busy. The place I go to was really good years ago, with some serious alternative treatments. Where Poesnecker was. But, my doc really isn't as into them anymore, or he doesn't recommend that much unless I press and even then....he doesn't bring it too much attention. Bizaro.
     
  8. maryb

    maryb iherb code TAK122

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    Spitfire - whilst not relevant to you, seen a link for a clinic in the UK who are doing these FT - they provide the poo!!! 10 infusions over 10days cost a whopping £4000. Perhaps a while before its available for most of us MEers.
     
    The Spitfire likes this.
  9. Misfit Toy

    Misfit Toy Senior Member

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    My Lord, maryb. That's a lot of money for poop! And I am sure there is a lot that goes into it. I so wish these places would make it less expensive for those that are so sick. What a racket/business deal it is for them. I am wondering if there is any anecdotal evidence on people with CFS...how they fair with this treatment. Does it help? Is it temporary or does it eventually not work or did it ever work?
     
  10. jenbooks

    jenbooks Guest

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    You can do it at home if you have a donor you trust who donates...daily...
    Some don't test their donors, YMMV.
    In mice they already have figured out which bacteria are the goodies pushing out the baddies and I think in humans that time will come. First they have to prove it, I am pretty sure the study is approved, with sequencing etc.
    It's bacteroides and fragilis species that do the heavy lifting. So wait around and there will be a suppository or enema one of these days.
     
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think I read 'somewhere' about someone developing an intestinal microbe infusion make with microbes grown in a laboratory.
     
  12. Ember

    Ember Senior Member

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  13. August59

    August59 Daughters High School Graduation

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    There was an article in one of the Web Magazines about the fecal transplants and it was shunned for 4 or 5 years, but (no pun intended) it is catching on and being administered at several clinics and hospitals. They were using the implants mostly to rid the colon of c. difficle(?) and it has close to a 90% rate of curing it.
    One of the clinic directors said the biggest problem was hanging onto their personnel as they just could not take the odor. They were wearing 2 or 3 surgical mask with "Vic's Vapor Rub" in between
     
  14. Waverunner

    Waverunner Senior Member

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  15. aepalisades

    aepalisades

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    I read a study from Canada recently and they prepared / grew their own strain of bacteria fro poo from a healthy female donor in an anaerobic gut like environment then used it to infuse into the ill patients. They called their fake poo "RePoopulate". It sounded like they planned to market it eventually.

    Another forum I was in indicated one person used gelatin caps that were double walled from Whole Foods grocery store to inject poo via syringe into them then swallow capsules daily for however long needed. But realize this method still would need testing to make sure communicable diseases are not in the donor's poo samples. I have not tried said method, so I cannot comment on it's usefulness. I hope this helps the desperately seeking treatment as a low cost potential method.
     
    SickOfSickness likes this.
  16. Misfit Toy

    Misfit Toy Senior Member

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    Ugh, gross. Even the thought of swallowing poop in a capsule makes me dry heave. The things we do for health.
     
  17. PNR2008

    PNR2008 Senior Member

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    I can't believe this thread. I'm sorry but I was always raised that poop was the enemy. Get it off your hands, butt. shoes, urethra and spinach. After 6 German shepherds I have picked up alot of poop which I can barely stand, even my cat has an expensive litter box that whisks it to a little container at the front to empty sight unseen. (Of course I look). In the acute stage of this illness I told Jesse Stoff I'd eat dog Sh*t if it meant getting better. I lied. I was in the throws of the begining nightmare of this horrendous disease.*********** Let's be clear about this , sh*t goes out not comes back in, I think it's somewhere in the Bible even. So let me draw the line in the sand......NO SH*T. I will be rolled into the crematorium with my own SH*T and nobody else's. I will have dignity if nothing else.
     
  18. Waverunner

    Waverunner Senior Member

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    @PNR: You don't eat it, you get an enema.
     
  19. PNR2008

    PNR2008 Senior Member

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    Waverunner, It doesn't matter how it's delivered Solient Green is still Solient Green or brown or whatever. I will protect both openings with my life.
     
  20. MishMash

    MishMash *****

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    Here in MD we had levels of tree pollen two Thursdays ago that were historic (at least according to the Washington Post) "High" pollen is considered over 1000. Here it reached over 2800! Do you know what pollen is? It is tree sperm. Basically, male and females are mating, and we are caught in the crossfire. And it is making me feel extremely sick. Not that the trees are getting it on, but allergic reactions aggravate CFS in so many ways. Especially when it is incredibly high.
     

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