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FMT in USA for CFS

Discussion in 'General Treatment' started by cecilia, Mar 29, 2014.

  1. cecilia

    cecilia

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    I am italian, I would like to have testimonials from CFS sufferers who did FMT with a VERY good doctor
    (like prof.Brandt, doctor Shepard or others).
    Thank you very much for your kind reply
    best Cecilia
     
  2. tyson oberle

    tyson oberle

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    tampa, florida
    I did 3 with Dr Shepard. It didn't help. If FMT's do help CFS then we probably need FMTs a few times a week for a long time (maybe years) from a perfect donor. I don't think doing just 3 is enough.
     
    snowathlete likes this.
  3. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    What's FMT? Is that fecal transplant?
     
  4. tyson oberle

    tyson oberle

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    tampa, florida
    yes
     
  5. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    There's a thread here about that that was started last month. I can't remember who started it.
     
  6. cecilia

    cecilia

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    Did you have enema or colonscopy ? Did doctor Shepard give you instructions to make enema at home ?
    Why did you make only three ?
    Thanks for your informations, I would like to come in Tampa (I have the donor in my family).
    regards Cecilia
     
  7. globalpilot

    globalpilot Senior Member

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    Ontario
    Same as Tyson, I did 3 with Dr Shepherd. No help either.
    Another useful resource may be Skye Curtis book. In it, she has a protocol for IBS which is daily for 10 days then once a week for 5 weeks. So maybe many more than 3 are needed.

    I only did 3 because that is what Dr SHepherd provides. Still considering longer term though.
     
  8. tyson oberle

    tyson oberle

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    I did 3 because that is what he recommended to start off with and then to wait a week or two to see if there is an improvement. Sure I could have done more, but this costs money and time.
    If you have a donor then why don't you do it yourself? But of course make sure you test your donor for everything. For CFS I think we need to be very strict with a potential donor's diet, lifestyle, test results, etc. I found 2 people who are willing to be donors for me who have tons of energy and are "healthy", but they eat a diet that I am not really comfortable with.
    I did an endoscopy with him, but I did not do a colonoscopy. He didn't think a colonoscopy would be useful for me.
    He didn't tell me do to any enemas.
     
  9. lnester7

    lnester7 Seven

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    @globalpilot @tyson oberle Question, I am out of state, I would like to see this guy just so I can see how my mcorbiota is doing.
    1) The 3 therapies how often are they done and can it be done remotely?
    2) Did you get any tests on the different bacteria population? Did it help in any way?
    3) Did you feel any improvement at all, even one day only?
     
  10. globalpilot

    globalpilot Senior Member

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    The 3 infusions were done 3 days in a row. I'm not sure what you mean by whether they can be done remotely. If you mean, can you do them at home, yes you can. There are insturctions on the internet and Skye Curtis book is very good.
    I had Dr Shepherd do them due to the convenience to me.
    I haven't had my own microbiome tested yet as I'm not sure if/how it would help me.
    I have not felt any improvement from them. however, I did them because I've taken so many antibiotics over the years. I did feel an improvement for an hour or so afterwards but I think that was from lying on an incline.

    As far as I know, noone is testing before and after microbiomes and there is no 'goal' so to speak to work towards. That would be tremendously helpful in determining if 3 is enough or if you need more, or any at all etc, but we're not their yet.
     
    lnester7 likes this.
  11. SB_1108

    SB_1108

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    I was the one that started the thread… you can view it here:
    http://forums.phoenixrising.me/index.php?threads/fecal-transplant-diyers.28574/#post-438740

    Basically, I felt it was helpful but it wasn't a cure. My donor was pretty much over it after 18 attempts. I would have liked to have continued but maybe I will find another donor one day?
     
  12. lef07003

    lef07003

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    Hi for those of you who did this with dr s did you find any gi improvements even if it didn't help with the cfs stuff? I don't particularly care about the cfs symptoms changing I just want to bring the inflammation down in my colon and be able to tolerate some more foods. do you think if you did more than 3 it may have helped ? I am in Florida for a little longer and am wondering if I should do this while I'm down here since there are very few people that do them
     
  13. SB_1108

    SB_1108

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    I didn't do this with a Doctor but I do think its a worthwhile treatment, especially if you have IBS. Like I said before, it didn't seem to be a CFS cure for me but it was definitely helpful… I could tell, smell, and see a difference. I honestly think I would go so far as to say that everyone with IBS symptoms should have it done.
     

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