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!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
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. beike

    beike

    Messages:
    12
    Likes:
    0
    Arizona
    Hydrogen sulfide produced by streptococcus and enterococcus bacteria has been implicated by Dr. Kenny De Meirleir as a contributing factor in ME/CFS. This therapy may prove very helpful for people who have problems with these bacteria. My wife is XMRV positive and has an overgrowth of streptococcus in her gut. The same stool test showed she had low levels of secretory Iga in her stool. Here is a link with some info about secretory Iga: http://www.articlesbase.com/health-articles/autism-treatment-secretory-iga-immune-function-and-the-mucosal-barrier-1567239.html
    Dr. Kenny De Meirlier also found people infected with XMRV have lower Iga levels. This could mean that XMRV is suppressing the immune system’s ability to control the balance of intestinal flora, leading to the overgrowth of bacteria like streptococcus and enterococcus that poison the body with hydrogen sulfide.
     
  2. Glynis Steele

    Glynis Steele Senior Member

    Messages:
    400
    Likes:
    84
    Newcastle upon Tyne UK
    Hi there,

    KDM, Sheedy et al's study also looked at the fact that these bacteria are d-lactate producers, and stated that "this study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications."

    They go on to say that there is a need for measurements of d-lactate in CFS patients, compared with healthy controls, which would clarify whether d-lactate contributes to CFS, although this study has not yet taken place.

    "Results in this study elucidate a direct relationship between CFS patients with cognitive
    dysfunction and marked alteration of the bowel microbial flora where the dominance of the organism E. coli was replaced by the Gram positive homofermentative lactic acid
    bacteria, Enterococcus and Streptococcus spp. This relationship demonstrates the need for measuring D- and Llactic acid accumulation in biofluids of CFS patients compared to healthy individuals to confirm whether D-lactic acid may be involved in the pathogenesis of CFS"

    You can find the paper here: http://www.cfids-cab.org/rc/Sheedy.pdf

    I have found an application form, from Prof Paul Gooley who was also a collaborator in this study, who is going to take blood, urine and stool samples from CFS patients and compare them with healthy controls, to see whether d-lactate is higher in CFS patients.

    http://sacfs.asn.au/download/Lactic acid study 2008 - Ethics Application.pdf

    Glynis
     
  3. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,150
    Likes:
    1,720
    Somewhere near Glasgow, Scotland
    interesting, thanks for that! :)
     
  4. CBS

    CBS Senior Member

    Messages:
    1,379
    Likes:
    313
    Western US
    Here's an article in Slate: The Enema of Your Enemy is Your Friend

    There's even a brief description of how to "do it yourself" originally written by Dr. Mike Silverman, University of Toronto.

    And to think we've just been flushing this valuable natural resource away for our entire lives. Beware of Craigslist ads for lightly use blenders ("Used once, in excellent condition").
     
  5. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    Anyone familiar with the game, "Would you rather?" (it's basically just questions asking which untenable situation one would rather deal with if forced to choose)

    Anyway, this would make a lovely "would you rather?" question: Would you rather have ME/CFS or be healthy but have to ingest feces to achieve that health?

    If it were definitely proven to be a cure (and I mean a real cure, not just an improvement), I would have to choose "ingest feces" but ugh - what a choice to be faced with! Just the thought makes me seriously nauseous.

    And, I agree that you would think that there would be a way to, in essence, at least "clean" the cr@p before giving it to someone - to filter out the good stuff and only transfer it.
     
  6. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    if you actually did this treatment, would you ever tell a future partner that you literally swalllowed cr@p.....somehow I just can't see that conversation going anywhere good ; )

    and on the flipside, would you ever want to kiss someone who had to resort to this to get better (I just can't quite wrap my head around that one, even knowing how horrible ME is)
     
  7. leela

    leela Slow But Hopeful

    Messages:
    2,469
    Likes:
    3,078
    Couchland, USA
    This is the one and only instance where I can say with conviction that I'd rather take it up the bum:eek:
     
  8. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    <----- Laughing out loud reading this. Actual tears. PEM from laughing right now. Makes me think of this joke: "A cannibal passed his brother in the woods."

    Tammie - Would you rather is a GREAT game!

    CBS- I have spent a lot of time on Craigslist and that line put me over the top.

    Why is poop so funny? Lol even when it's serious its hilarious!
     
  9. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    839
    Likes:
    260
    Just happened to have that little gem bookmarked huh Shane? ;)
    Well, that's not quite all you need is it! (2-quart?! Lets hope that bottle of saline was a big one.)

    Anyone from Seattle? Is Wallingford a nice part of town? http://seattle.craigslist.org/see/app/2174688808.html

    I have to say, if it meant likely significant improvement I might give it a go. But it's not something I'd be bringing up at dinner parties in a hurry.
     
  10. kat0465

    kat0465 Senior Member

    Messages:
    230
    Likes:
    3
    Texas
    ;] leela, i so agree with ya! in this case, its the only way to go.
     
  11. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    534
    Washington State
    Okay, I'm curious, is anyone actually seriously considering this? Anyone willing to admit it?

    I was reading this blog post the other day and the linked study (sorry I can't figure out how to direct link it) and what stood out to me was that people taking an antibiotic that wasn't supposed to affect gut flora had their gut flora permanently altered.....it recovered, but incompletely. Now if that's what happens with an antibiotic that isn't supposed to cause problems, then what about the big guns?

    Both my initial onset and my severe onset were times I was taking very strong antibiotics (multiple ones over the course of several weeks). The lightbulb just went on in my head today, what if this really is a major thing with me, and can be helped through fecal transplant? I don't need to use the "c" word, or even the "t" word--anything that might result in improvement is game for consideration in my book.

    So it's off to think about it and research it some more and continue to prioritize the things I'm thinking of trying.

    Anyone else?
     
  12. dannybex

    dannybex Senior Member

    Messages:
    2,285
    Likes:
    584
    Seattle
    Hi Dainty,

    See my post on the first page (or 2nd?) of this thread. Legitimate studies have shown that introducing -- giving patients parasites, or other gut bugs -- instead of killing them off, has resulted in improvements, and even cures of certain problems.

    Here's an article discussing IBD and Chron's:

    "About 10 years after improved hygiene and deworming efforts reduced worms in a given population, I.B.D. rates jumped. Weinstock had his hypothesis: after a long coevolution, the human immune system came to depend on the worms for proper functioning. When cleaner conditions and new medicines evicted the worms from our bodies, the immune system went out of kilter. “Hygiene has made our lives better,” says Weinstock, now at Tufts University. “But in the process of eliminating exposure to the 10 or 20 things that can make us sick, we’re also eliminating exposure to things that make us well.

    http://www.nytimes.com/2008/06/29/magazine/29wwln-essay-t.html

    And with the high rate of gut issues w/CFS, perhaps the same problem is occuring?
     
  13. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    534
    Washington State
    Danny, I read your post and i agree. I've researched helminthic therapy before, seriously considered it (and still might someday) and definitely don't want antibiotics near me again. The thing is, I had had the impression that taking sufficient probiotics in the years since would balance out my gut again. It appears the science suggests otherwise.

    However if abx really did completely throw my gut for a loop (no pun intended) and despite all the probiotics I've taken over the years the flora just isn't right, then it seems fecal transplant would be a logical next step.
     
  14. dannybex

    dannybex Senior Member

    Messages:
    2,285
    Likes:
    584
    Seattle
    Well, it does of course sound gross, but only if we think about it in a Saturday Night Live sort of way. :)

    I'm sure if you find the right doc familiar with the procedure (maybe contact the guy in the article for a referral?) that it's just as clinical as any other procedure.

    Probiotics -- there are so many many different strains, and so many trillions of them, and different interactions, that it's always hard to find what will be best for you. I used to tolerate several different brands quite well, but haven't been able to since I 'dumped' too many heavy metals (mercury) from being overprescribed methylation supps. Rich suggested that the probiotics were 'remethylating' the folates, so I stopped them 2 months ago...

    Good luck! :)
     
  15. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    114
    I'd fly to England and do it--or might at some point if life settles down and cash settles up:). But I wouldn't do antibiotic therapy ahead of time. There are interviews on youtube with the doctor who pioneered it. It has helped MS Parkinsons CFS as well as Crohn's etc, which is what I bleieve he started treating for.

    I don't have any problem with it. What's gross about it? If you want to get grossed out, read the stats on the amount of fecal matter left on your own butt after going to the toilet and an inadequate wipe with toilet paper, which ends up in the local swimming pool--yuck!!! And on your hands, and even on the soda pop dispensers. I read about it somewhere and never forgot it :(.
     
  16. Bob

    Bob

    Messages:
    8,917
    Likes:
    12,639
    South of England
    Dainty, I'm fascinated by the whole concept, in terms of whether it might improve my health in various ways, but I'd never be brave enough to go through with it, partly because I have questions about the safety of it... How could we be sure that there wouldn't be some sort of infection, disease, virus or other harmful pathogen in the donor feaces? I guess it would be safer to accept donations from a partner or family member. But what if they carried a strain of XMRV, or some other unknown virus? Sorry to complicate things, but these would be my concerns about it. I don't know if these concerns have been addressed by the researchers?

    It's a shame that the science isn't more advanced, so that they could grow all the bacteria in a more palatable way outside the body in incubators.

    jenbooks... thanks for that!!! I'm never going swimming again!!! lol
     
  17. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,150
    Likes:
    1,720
    Somewhere near Glasgow, Scotland
    So, would this prove that the Weasels really do eat sh*t? :D
     
  18. Dainty

    Dainty Senior Member

    Messages:
    1,357
    Likes:
    534
    Washington State
    That's what I was thinking, too. More like a "mega probiotic" (as the article mentioned) than as a true poo transplant. Hmm, a poo supplement? LOL

    I suppose if it *doesn't* work without antibiotic therapy then there would be the option to try it with, though I doubt I'd do that. I have a pretty low view of abx at the moment.

    I agree, it isn't without risk, and the risks are not yet fully known. However that seems to be the case with any serious experimental treatments we do, such as ARVs right now.

    Some people want to take the risk, others don't. With ARVs I'm in the latter category, with fecal transplant I just *might* be in the former. It's definitely not something to take lightly, but I think with my medical history I'm a good candidate for this actually helping. Wish I wasn't so brainfogged so I could do more comprehensive research on the subject. My plan for right now is to get a hold of all the information I can pertaining to abx permanently changing gut flora, how gut flora influences the immune system, and anything having to do with fecal transplant. Once I'm armed with info I'll present it to two of my doctors and get their take on it. I might at some point contact this doctor as well.

    For me, due to extreme chemical sensitivities, the DIY option would be the safest bet, with the donor poo being screened by a doctor, of course.
     
  19. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    114
    Nice to get it from a healthy baby breastfed by a healthy mom, no vaccinations...is there such a thing? :)

    I'm reading about the microbiome and immunity now.

    The reason I wouldn't do abx is I already have disrupted gut flora, and they will disrupt it more. OTOH, "clearing space" for the transplant is reasonable I suppose. Maybe you get a colonic before or something.
     
  20. RunningOnEmpty

    RunningOnEmpty

    Messages:
    2
    Likes:
    1
    Antibiotics Caused My CFS

    Yes, I am!!

    Dainty, my symptoms all started while I was taking broad-spectrum antibiotics for acne, and they are still very much tied to the gut: I feel fine until I eat a meal, and then I feel lethargic, brain-fogged, and tired. This is regardless of what I eat.

    I'm trying to find a doctor who is willing to perform this procedure.

    Anyone know of a doctor who will do it?
     
    aimossy likes this.

See more popular forum discussions.

Share This Page