1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Faecal transplant eases symptoms of Parkinson's (and CFS)

Discussion in 'Latest ME/CFS Research' started by Bob, Jan 26, 2011.

  1. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    Great find mingo, thanks for these links...
    They're interesting articles...

    They talk about gut flora being linked to psychiatric illnesses; the stress response of the body; Crohn's disease; asthma; and other illnesses.

    One lab has successfully cultured gut bacteria in the lab, and successfully transplanted it into mice.
    (So I think this might be a slightly less scary way of doing faecal transplants!)
    And that research team seems to be carrying out particularly interesting research.
    aimossy likes this.
  2. kday

    kday Senior Member

    Messages:
    260
    Likes:
    48
    I had bad gut problems. I went on coconut water, DGL, Marshmallow Root, antibioitcs, 400 billion organisms of probiotics/day, and the gut problems are a lot better. I am on 100 mg Doxy BID now with no gut issues that I am aware of. That's one symptom that has improved dramatically. Candida no longer seems to be a problem either.

    Now my point is, can I have bad gut issues without GI, IBS, or other types of symptoms?

    That all being said, I would still try a fecal transplant in a hearbeat if I knew how to obtain or prepare one. I would have no reservations.
  3. Dainty

    Dainty Senior Member

    Messages:
    1,353
    Likes:
    519
    Washington State
    Okay, so I have an update for you all.

    No, I haven't tried it.

    Yet.

    I had a consult with my doctor today, primarily about other things but I also managed to bring up the subject of fecal transplants. He was aware of the studies (phew) and actually surprised me by saying that as long as the donor 'poo comes from a healthy family member then it shouldn't be dangerous for me. He said that it does seem worth trying, though when he started talking about issues with the logistics of doing it I jokingly mentioned that there were DIY instructions on the Internet, and then discussing it actually turned serious. His advice: "Whatever the Internet says, DO LESS." hahaha. He's a great doctor, not a CFS specialist but has been very helpful as my main doctor for several years now and I trust his judgment.

    So while I'm not quite planning to do this, I have settled the matter in my own mind that it's doable and shouldn't be harmful. Currently my focus is on other things, but yes, "fecal transplant" is now on my mental list of treatments that are likely in my future.

    You have my permission to laugh. It's good for you. :D
    aimossy likes this.
  4. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    There is an issue that I worry about, in relation to this subject.
    If our family members are carriers of XMRV, and the XMRV has mutated since the infection (just as HIV mutates), then we could be exposing ourselves to different variants of XMRV, and possibly more virulent variants, or just re-exposing ourselves to our existing variant of XMRV at viral levels our bodies can't cope with.
    If you are using a partner for the donor, then these concerns might not be so relevant, because of existing physical contact with the partner, but we can't be sure until we know about modes of transmission.
    I think that this concern is worth giving serious consideration to.
  5. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    633
    NY
    Talk about being the butt of a lot of jokes. I can't foresee any improvement in that respect, heh.
  6. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    Are there any places in the US that do this procedure?
  7. Dainty

    Dainty Senior Member

    Messages:
    1,353
    Likes:
    519
    Washington State
    Okay I just now laughed myself to tears with a thought: you know how you can get medical bracelets engraved with important medical info? Well organ transplants are usually considered something that should be included on those, and for a split second I allowed myself to picture the faces of the paramedics if they read a bracelet that said "fecal transplant" on it.

    Of course no such bracelet should exist, but oh, to see their reaction...

    Hmm. I hadn't thought of that.

    One thing, though, is if the donor is completely healthy, then if they have XMRV too then what if their health despite XMRV is due to having a good ecosystem of gut bacteria and viruses going? It seems like we just don't know enough yet either way....I suppose there would be a risk with XMRV, but then again even if that risk is there the treatment could be right there too.

    Looks like Dr. Lawrence Brandt, who practices in New York, is the one who developed the procedure. It seems like there ought to be others, but I'm having difficulty finding them.

    If I end up doing it I would probably do it myself at home.
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,850
    Likes:
    4,763
    Sth Australia
    Hahaha dainty.. I did anticipate that you were about to say you tried it from your first line and started to get excited that someone was about to tell me about their new treatment, so that second line helped stop me from a huge letdown. :p

    Your thought of the medic alert bracelet made me laugh too. thanks :)
  9. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    112
    Who even says XMRV is relevant or infectious? The jury is still way out on that one. And why just worry about XMRV? Why not worry about all kinds of viruses that healthy person could be holding in check along with bacteria etc? And who's to say they are transmitted in poop anyway?

    The idea is that healthy poop contains all kinds of unknown organisms that can correct an abnormal population in the gut that leads to all kinds of systemic disease and raised cytokines that actually cross the bbb and end up in urine, blood and tears and might be responsible for part or all of some chronic illnesses. Healthy poop probably also signals to the innate and adaptive immune systems to get back on track. It works in ways we currently have only vague ideas about.
  10. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    633
    NY
    Agree with all of this. The emphasis on XMRV is way overblown, imo. It's led to some jobs for a few researchers, but not much else for the ME/CFS community. As Pasteur reputedly said, "the germ is nothing, the soil is everything."
  11. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    hi jenbooks,
    If you are referring to my post, then I didn't say that XMRV was either relevent or infectious.
    I was careful to use the words "if" and "could" to be clear that this is something to consider, rather than anything definite.
    Yes, the jury is still out, but that doesn't mean that we shouldn't consider the possibilities.

    The reason why I mentioned XMRV rather than other viruses or pathogens, is because we know so little about XMRV compared with other known pathogens.
    If a partner is infected with some other disease-causing virus, then it is quite likely we would know about it because they would have the associated disease, whereas if a person is an XMRV carrier, without symptoms, then we wouldn't know about it unless they had been tested.
    Also, we don't know how XRMV is transmitted between people, if at all, and faeces might be a particularly common means of transmission.

    I'm not dismissing the dangers of infection from other pathogens. I was just highlighting the possible danger of XMRV re-infection.
    I think that HIV patients can be advised to be careful about re-infection, because of the potential of being infected with different strains, including more virulent strains.
    If viruses are not transmitted in faeces then there's nothing to worry about, but if they are, then it's something to consider.

    I don't know if herpes viruses are carried in faeces, but that might be something else to consider because it is thought that they might contribute towards the ME disease process.
    Also, Chia does work on enteroviruses, which he finds in the gut, so maybe that's something else to consider.

    I think it's helpful to point out potential dangers to each other, so we can all make fully informed choices.
  12. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    Had a consultation with my Gastroenterologist today and I showed him my stool microbiology results which were ordered through my M.E./CFS doctors clinic. He looked at them and said you know theyre doing faecal transplants for these types of results. I said that I had heard that and that a doctor in Sydney is doing them. He said you could take a friend up there and get one lol!
    aimossy likes this.
  13. madietodd

    madietodd Senior Member

    Messages:
    2,424
    Likes:
    1,603
    East Coast, USA
    So, are you going???
  14. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    Very interesting... We don't have such things as stool microbiology tests on offer to us in the UK... And even if they were available, they wouldn't know what to do with the results!

    And so are you tempted to go to Sydney?
  15. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    Here's something posted on another thread...
    I think it's an example of the potential dangers that people should be aware of, that I mentioned in an earlier post...

  16. andreamarie

    andreamarie Senior Member

    Messages:
    195
    Likes:
    2
    I have Crohn's disease and see nothing funny about this topic. I have been following the research. I've been in remission for forty yrs but still am very susceptible to g.i. problems. I had a colonoscopy two wks ago and my gastro (who's top notch) was thrilled. HOWEVER, SINCE THE PREP I'VE BEEN HAVING SOME PROBLEMS. I suspect my gut flora was disturbed by the prep(I do the best prep my doc has ever seen because, trust me, without a good prep you might as well not bother.) I lost a dear friend to colon cancer because he didn't return when the gastro told him his prep didn't allow him to see everything. If a colonic would work, a colonoscopy prep would be a good treatment. I did have c. diff four yrs ago after using Miralax when I was constipated from pain killers. It worked too well. I was on Vancomycin, which fortunately my insurance covered (it's a $1000 treatment.) I also took s. boulardis, which is a bacterial probiotic as opposed to a lactobacillus probiotic that I take every day (Culturelle.) I already take Questran due to the surgery I had for Crohn's to prevent bile salt diarrhea. I upped the dose from one to four a day. I recovered extraordinarilly quickly, considering I have Crohn's. Vancomycin only hits the colon, does not affect the rest of the g.i. tract. I added the two other treatments after reading an article in Lancet (I wrote medical copy for the Crohn's and Colitis Foundation.) Presently, I'm doing stool cultures again, started the s.boulardis today (drugstore.com Florastor) I don't want to up the Questran till I finish the cultures because it binds toxins and could mess up the culture. C.diff is VERY hard to culture. That's why the name difficile is in it (French for difficult.) It can be a life threatening infection and feacal transplants are used as a last resort because Flagyl and Vancomicin are usually effective. C. diff makes IBS easy; I was having twenty watery movements a day and a white count through the roof.


    I never read it had to be a family member donatine and modern gastroenterology has interestingly acceptable for the most difficult procedures.

    I have also been reading about pigworms but I haven't found really good studies. One thing does concern me. My late cousin picked up a parasite on a trip to China that he could have lived with all his life. But he got HIV AIDS and his immune system couldn't contain it and it killed him. There's no treatment for it; it rarely affects people.

    The CFS doc I used to see does take Culturelle herself for general autoimmunity. It's one of the few lactobicillis probiotics that isn't destroyed by stomach acid. Cheapest place I've found is drugstore.com and there's one that's lactose free.

    Crohn's can be a devastating disease. I nearly died from it when I was twenty. There are major new treatments but it still can be a killer.

    It's a very complicated disease and is familial but not contagious. They have identified three genes. I have family all over the world because I'm Jewish (higher incidence)who fled the Holocaust and twenty per cent have it. I've never met most of them.

    The incidence is highest the farther you go from the equator, like MS, and theories come up repeatedly trying to explain this. It is an autoimmune disease.

    I could write a book (I edited one) on Crohn's but I'm getting wiped out; I've been busy all day.

    Again, people with Crohn's would do anything: eating worms is much more appealing than a catheter in your main aorta because your small intestine is gone. One infection and your dead. I've gone to too many funerals of very young people.

    IF YOU ARE OVER FIFTY GET A COLONOSCOPY. I THROW THAT IN BECAUSE I'VE LOST THREE FRIENDS. ONE HAD SEVERE FMS AND WAS AFRAID THE PROCEDURE WOULD BE FLARE HIS FMS BECAUSE YOU HAVE TO LIE STILL FOR A WHILE. HE WAS FIFTY THREE. HE'D STILL BE IN MY LIFE IF HE'D GONE AT FIFTY. FMS IS WRITTEN IN MY CHART BUT IT IS NOT A REAL PROBLEM FOR ME AND THE NURSE WAS VERY CAREFUL POSITIONING ME. MORE LATER. AND NO JOKES.
  17. andreamarie

    andreamarie Senior Member

    Messages:
    195
    Likes:
    2
    I'd like to add when I was dx in 65 I was told it was a psych disease. They had elaborate theories that even involved the type of mother you had. The psych theories kept changing so I kept getting different personalities. It didn't matter that they had pathology slides and deaths frequently.

    The theory when I got it was "a passive mother." God help the resident who told this to my "most proactive mother in the world." Even though I couldn't eat she'd bring homemade goodies every day and put them on the window sill. I had more attention than anyone in the hospital.
    "No brownies for you; don't come near my daughter," she said as he went running down the hall. She made five kinds of brownies and he'd been in three times a day. We never saw him again.
  18. redo

    redo Senior Member

    Messages:
    830
    Likes:
    89
    I agree. I can't understand why someone find it amusing to harass those who are ill enough that they find it worth it to try this treatment. Nor do I understad what's funny with poo jokes. I have left kindergarden, and when I did, I also left the poo humor.

    I am losing my vision, I am losing sensation in my feet and hands, and it's slowly moving upwards towards my calvs. One thing is having to put up with all the trouble of finding a doc who can help me with this treatment, and another thing is people finding fun in my misery. Or amusing themselves over me having to do a "weird" treatment.

    There's a new articleout about this now.
    www.abcnews.go.com/Health/diarrhea-...ieved-diy-fecal-transplants/story?id=13601702

    I'll read your whole post later andreamarie, it's just my vision which makes me unable to read more now.

    Silverman (not that one, but another Silverman) have published the procedure. I guess it's easy enough that any clinic doing enemas can perform it, and some are able to do it themselves.
    http://www.mediafire.com/?xyp9k29alurs1c5
  19. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    Hi redo,
    I'm sorry to hear about your serious health issues...
    Please don't take any comments on this thread personally...
    It has just been a light hearted discussion about a serious issue...
    Although there has been some humour, there has been plenty of substance, and some important information shared.
    Thanks for the very interesting link...
    Many best wishes to you.
    Bob

    To everyone:
    redo's link has a video featuring a woman who had a successful transplant...
    She had had a bacterial infection (C. diff / Clostridium difficile) which was making her ill.
    http://www.abcnews.go.com/Health/di...ieved-diy-fecal-transplants/story?id=13601702
    aimossy likes this.
  20. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    To Maddietodd and Bob,

    I have just read your responses to my post and the answer is, at the moment "no" as I am trying another regime of antibiotics (Gabbroral - Paromomycin) 4 days on per month with high potency probiotics (several types including Sacchyaromyces cerevisiae - boulardii) for the rest of the month. This cycle happens for three months then is reviewed. I think it is a KDM regime. Perhaps down the track I may consider it!

See more popular forum discussions.

Share This Page