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Faecal Transplant in UK

Discussion in 'General ME/CFS Discussion' started by Notjustfatigue, Aug 11, 2018.

  1. Notjustfatigue

    Notjustfatigue

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    how are you mates???

    We are 3 patients from Spain who are thinking about getting fecal transplants. At first, we would do it in London at the Taymount clinic (https://taymount.com) or at the Dove clinic (https://www.doveclinic.com/fmt-faecal-microbiome-transplants).

    We all have CFS and several comorbidities (MCS, detox problems, dysautonomia, etc). I would like to know if someone had tried fecal transplants and if so, what degree of improvement has been achieved and if by chance someone had references from the Dove or Taymount clinics.

    Hugs and thank in advance for the replies!!! :hug:
     
    Last edited: Aug 12, 2018
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  2. Notjustfatigue

    Notjustfatigue

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  3. Notjustfatigue

    Notjustfatigue

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    Up!!! Please any reply!! @JaimeS @Hip??? Anyone who can help us in any way?
     
  4. Hip

    Hip Senior Member

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    If you search for "Taymount" on this forum you'll find some experiences of patients who had a fecal transplant in this somewhat expensive UK clinic. I found three people who went to this clinic: here, here and here, but not much mention of a successful outcome.

    Dr Kenny De Meirleir experimented with fecal transplants, and found that they help, but the benefits disappear after a few months. Borody did a study of bacteriotherapy in ME/CFS patients with IBS, and claimed a lot of long term success, but only in those with IBS.

    Although the Borody study implanted cultured gut bacteria (Bacteroidetes, Clostridia, and E. coli) into the colon, rather than a fecal microbiota transplant. So that's not quite the same as FMT.

    You can search this forum for Borody.

    You might like to write to these clinics and ask them what their success rate is for ME/CFS. If they don't provide you with any figures, then it's probably because the success rate is low.
     
    Last edited: Oct 10, 2018
  5. JaimeS

    JaimeS Senior Member

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    There's a real issue of infection, especially in the immunocompromised. What was okay to be in the gut of a healthy person may not be okay for you or me.

    I know at least one person who accidentally got a transplant from someone who was coming down with a stomach bug. (It was someone they knew, so it was a certainty, not a guess; they watched their friend become ill.) The pwME was laid flat for months, of course.

    Anecdotal, but it seems to be what we have for this stuff.
     
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  6. Notjustfatigue

    Notjustfatigue

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    @Hip @JaimeS Thank you for your quick reply. I "don´t matter" (of course i do, but the economical one is not the most important stuff) spending 5000-6000€ for a near one year relax (having in consideration that i used to spend just a little less in supplements).

    @Santino @SB_1108 @Tabitha What about your FMT?. Achievements and lasting?.

    The results of Bodory don´t sound any bad. Good expectation. Don´t you think?.

    I was wonder about doing first a Ubiome test, retake again a Keto/paleo diet and repeat Ubiome again and after that doing the FMT.

    Also some time after FMT i would repeat Ubiome tests, and i will negociate with the clinic a next year repeating cycle.


    Thank you for your replies!!


    Hugs!! :hug:
     
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  7. Notjustfatigue

    Notjustfatigue

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    So you mainly thinks there are more risk to inmunocompromised patientes, than benefit. That good stuff for at least think it so much before taking any decision. I was hopefull about Borody results and lot of stuff you can read in many ways..:aghhh::aghhh:

    No positive references, especially from Taymount or Dove Clinics?.

    @JaimeS the person you know receives the transplant from any of those clinics?

    Hugs:hug:
     
    Last edited: Aug 12, 2018
  8. JES

    JES Senior Member

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    I would say the risk for someone immunocompromised is very real, yes. For example I have tested dozens of probiotics over the last five years. In the beginning I could tolerate them quite well, but now I can't anymore. Now about 30% of the probiotics I try will give me SIBO, about 60% will produce brain fog, and about 5-10% will cause a huge worsening (notably soil-based probiotics). I would think of a faecal transplant as a probiotic times 100, so if you are someone who doesn't tolerate probiotics well, it may not be a good idea.
     
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  9. Notjustfatigue

    Notjustfatigue

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    @JES Thank you for your reply. We are a group. I don´t used to tolerate bad them, but i had a lot for try. I should also ask my other mates. Thanks again.

    Hugs:hug:
     
  10. kangaSue

    kangaSue Senior Member

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    You can't have a worse "leaky gut" than those who have active lesions in the bowel from Crohn's or Ulcerative Colitis but I don't see any of them dying from doing FMT. There's a risk with this, yes, just as there is with sticking any biological substance into your system.
     
  11. ebethc

    ebethc Senior Member

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    good point... crohn's is n-a-s-t-y...

    do ppl have to do mutliple FMTs?

    is it done by enema, or capsules?
     
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  12. Thinktank

    Thinktank Senior Member

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    I have Crohn's and i know of several other patients who do or have done FMT (from healthy family donors) with success. It's a continuous procedure otherwise their disease relapses. It's not a one time cure all kind of thing.
     
  13. ebethc

    ebethc Senior Member

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    how often do ppl do it?

    how is the FMT put in you body?
     
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  14. Thinktank

    Thinktank Senior Member

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    That depends, some need it every few days, others bi-weekly.
    It's administered through the rectum.
     
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  15. ebethc

    ebethc Senior Member

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    Is it an outpatient procedure?
     
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  16. Thinktank

    Thinktank Senior Member

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    They do it at home by themselves... Most had their donor thoroughly checked.
     
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  17. kangaSue

    kangaSue Senior Member

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    It's only done commercially in the U.K. and Australia I think and then it's very expensive for what it entails so it's more often done as a d.i.y procedure using a friend or family member as a healthy stool donor.

    I think most don't people don't do it often enough though in thinking that just a couple of times will do the trick and I've seen where it's taken the best part of doing it weekly for 18 months after an initial 10 day intensive daily treatment to get remission in Crohn's Disease.
     
  18. Notjustfatigue

    Notjustfatigue

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    @kangaSue Do you then think they could be a good stuff por ME patients???

    We will do it in one of de clinics mention above, booth in London, the Taymount clinic (https://taymount.com) or the Dove clinic (https://www.doveclinic.com/fmt-faecal-microbiome-transplants).

    We would have to do one for day Monday to Friday during two moths.

    In this case it would be M-F during two weeks (10 infusions).

    It´s fully outpatient. We should go 2 hours first day (Monday - one hour to colon cleanse and one another for the first FMT) and then from Monday to Friday everyday during two weeks (10 FMT).

    We would do it in a cualified Clinic with huge experience.

    In this case we would use a clinic who have high standart in the donant selection.

    In our case, we do it with much expectatives in ME symptoms. I have IBS diagnosed and my mates are allways gut bad, but what impides us to live are ME.

    Just is commercialize in UK for ME (among other neurologic illnesses). In rest of couintries it used to be legal just to threat Clostridum Difficile.

    Hugs :hug:
     
  19. bertiedog

    bertiedog Senior Member

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    In general these people will have had their FMT through a hospital where the sample is carefully tested for pathogens before being given to the patient. This isn't the same at all as what the Taymouth clinic do. I don't know about the Dove Clinic cos haven't looked that up but I did carefully research the Taymouth and it's nothing like the way the NHS treats patients with C Diff.

    Pam
     
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  20. Notjustfatigue

    Notjustfatigue

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