research results - immune system attacking good gut bacteria
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Gabes-Apg
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re the fecal transplants
Tex and I discussed this based on some articles i posted a few months back.
(and darn it - i cant find the posts)
if.... we could get our fecal implant from a remote tribe that has not been tainted by modern day toxins, - preservatives, additives, processed foods, too many meds and antiobiotics etc and the genetics are fairly pure. THEN maybe we could return the gut to the state it should be....
Tex and I discussed this based on some articles i posted a few months back.
(and darn it - i cant find the posts)
if.... we could get our fecal implant from a remote tribe that has not been tainted by modern day toxins, - preservatives, additives, processed foods, too many meds and antiobiotics etc and the genetics are fairly pure. THEN maybe we could return the gut to the state it should be....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes, I'm hopeful that the situation isn't that bad. They've had great success with treating C Diff and even UC to some extent with normal healthy people stools without having to resort to tracking down the stool of some undiscovered Amazon pigmies. As long as the donor hasn't had abx in recent months and they don't have GI or immunity issues, they're likely good candidates (which can be confirmed to some extent with a stool culture). I know what you mean though; I bet even "healthy" folks have had their flora compromised to some extent with abx usage, excessive hygiene, and the removal of fermented foods from our diet.
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ObsessedMrFixit
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Well, I think I should chime in here now. The whole microbiome/probiotics/antibiotics issue is a significant topic of research for me these days. The idea that the immune system can attack the commensal microbiome is not far-fetched. In fact, its been proven with research that bacteria contacting the epithelial wall elicits an immune response.
As for me, I've done FMT twice now. So far, I don't have any significant changes to report. BUT, I am basically in remission on diet alone. So, I may have to try a problematic food to see if things are improving or not. Also, I have a scheduling challenge that I didn't anticipate. My donor's body doesn't work on an alarm clock schedule, so between her work schedule and mine, and her somewhat unpredictable body, the FMTs are, so far, a week apart. So, I could easily see that doing these a week apart wouldn't result in much change. It could easily be that my body needs a "shock and awe" campaign (to borrow a phrase) to get normal gut microbiotia going again. So, when my primary donor (wife) is cleared for donating (currently using secondary donor), we'll be moving to a daily FMT for a week, just like Borody's original protocol.
Eric, which form of MC do you have?
So, my theory on my particular disease (LC) is that antibiotics plus a huge amount of stress caused a chronic degradation of my intestinal mucosa. Since antibiotics played a role in the development of the disease (imho), probiotics of some kind can/should play a role in my healing. So, I too am trying FMT. While the idea of getting your "donation" from someone who has never experienced modern medicine's well-meaning-but-slightly-misguided use of antibiotics has some sort of exotic appeal, it has (imho) been proven unnecessary. Lots of research papers out there on FMT, gut microbiota, and so on, which show that there are many "stable states" for the collection of gut microbiota. In other words, there is not a one-right-answer set of commensal bacteria that results in a healthy human who is able to digest any food you throw at it (within reason).PubMed wrote: Permeable intestinal mucosal layer allows bacteria to contact epithelium, causes immune response:
"Bacteria penetrate the normally impenetrable inner colon mucus layer in both murine colitis models
and patients with ulcerative colitis"
free paper
PMID: 23426893
[PubMed - as supplied by publisher]
Tex---I'm really curious to know who else has tried FMT. On this board, I have found only one other person who tried it, and she never finished the story, so we don't know if it worked or didn't.PNAS wrote:Incomplete recovery and individualized responses of the human distal gut microbiota to repeated antibiotic perturbation
http://www.pnas.org/content/108/suppl.1/4554.full
As for me, I've done FMT twice now. So far, I don't have any significant changes to report. BUT, I am basically in remission on diet alone. So, I may have to try a problematic food to see if things are improving or not. Also, I have a scheduling challenge that I didn't anticipate. My donor's body doesn't work on an alarm clock schedule, so between her work schedule and mine, and her somewhat unpredictable body, the FMTs are, so far, a week apart. So, I could easily see that doing these a week apart wouldn't result in much change. It could easily be that my body needs a "shock and awe" campaign (to borrow a phrase) to get normal gut microbiotia going again. So, when my primary donor (wife) is cleared for donating (currently using secondary donor), we'll be moving to a daily FMT for a week, just like Borody's original protocol.
Eric, which form of MC do you have?
Hi,
I have trouble separating in my memory, cases that involve fecal transplants and those that involve Helminth therapy. Consequently I can only recall with certainty, one member who has given fecal transplants a good try, and that is Ginny, who was unsuccessful after at least 2 attempts. I can guarantee you that if she had been successful in a later attempt, we would have heard about it.
I'm confused as to why you feel that weekly or even daily retreatments are necessary. If the bacteria are going to attach and become established, they will do so promptly after the first procedure, as long as it's properly done, and the recipient is not using any antibiotics. A second transplantation might slightly increase the odds of success, but if the bacteria don't attach by then, repeated procedures are probably a waste of time, effort, and money, IMO.
Commercial probiotic products are not in the same class as fecal transplants. Probiotics do not attach to the gut wall and establish colonies — bacteria in fecal transplants do, because they have become "qualified" by their previous life in a human gut.
And remember that just because successful transplanted colonies are established, that's no guarantee that this will resolve any problems. It will only help if a corrupt gut bacteria population balance is/was the cause of the problem in the first place, and that has never been proven. Even if a compromised gut bacteria balance is present, that does not prove that it is/was the cause of disease — it could just as easily be a result of disease.
Tex
I have trouble separating in my memory, cases that involve fecal transplants and those that involve Helminth therapy. Consequently I can only recall with certainty, one member who has given fecal transplants a good try, and that is Ginny, who was unsuccessful after at least 2 attempts. I can guarantee you that if she had been successful in a later attempt, we would have heard about it.
I'm confused as to why you feel that weekly or even daily retreatments are necessary. If the bacteria are going to attach and become established, they will do so promptly after the first procedure, as long as it's properly done, and the recipient is not using any antibiotics. A second transplantation might slightly increase the odds of success, but if the bacteria don't attach by then, repeated procedures are probably a waste of time, effort, and money, IMO.
Commercial probiotic products are not in the same class as fecal transplants. Probiotics do not attach to the gut wall and establish colonies — bacteria in fecal transplants do, because they have become "qualified" by their previous life in a human gut.
And remember that just because successful transplanted colonies are established, that's no guarantee that this will resolve any problems. It will only help if a corrupt gut bacteria population balance is/was the cause of the problem in the first place, and that has never been proven. Even if a compromised gut bacteria balance is present, that does not prove that it is/was the cause of disease — it could just as easily be a result of disease.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I have a concern about the donor being a spouse. I've noticed the longer I'm with my husband, the more alike we are in our GI problems. In fact, I suspect I may have caused his gluten intolerance, perhaps by passing on pathogenic bacteria or a trigger virus through sexual contact over the years. Wouldn't one expect a husband and wife to be colonized with many of the same bacteria? If so, would a spouse's fecal donation be different enough from your own to do any good?
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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ObsessedMrFixit
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Wow, tough crowd. Really tough. So,
As for Ginny's FMT trial, her own entries on this site indicate she tried her first FT 11/8/2011. Had to wait several weeks until second, due to donor's surgery and not wanting "corrupt" donor material. She last posted on the topic on 11/22. Then we never heard anything more on the topic. Strictly speaking, we can't rule that a success or failure. I see she's posted since then, but can't find any comments on her FMT. So, as far as I can tell, she tried it only one time. I would venture a guess that it didn't take, since I don't see a message about her being fully healed or in remission or something. Personally, I think this bolsters my belief that it can take multiple FMTs to get the good guys to take hold. My research on other folks' personal stories of FMT supports that claim (I have data on more than 50 people who tried it). In other words, I have first-hand data from folks who have done FMT who can clearly show that multiple infusions were required to achieve remission.
If one really has dysbiosis (which, I believe is the source of my LC), then, by introducing another microbiome via FMT, you're basically starting a war. The first wave of troops may or may not establish themselves, which is why you need to send in reinforcements (repeated FMTs). The reinforcements not only provide greater numbers, but also supplies (nutrients) for the existing good guys. Yes, it might nourish the bad guys, too. But if you're going to start a war, and your enemy can intercept your supply lines, you need to make sure you provide superior numbers in order to win the war.
As far as spouse or not....I have lots of data from folks who've done this at home. Most of them use a spouse, as it is the easiest, most convenient source of, um, the critical material. Not all have achieved remission. But more than half of those who have tried it, and pay attention to what they're doing, have at least some measure of success. Given that this treatment method is in the earliest stages, and the risks are low, that's enough for me to try it.
As for Ginny's FMT trial, her own entries on this site indicate she tried her first FT 11/8/2011. Had to wait several weeks until second, due to donor's surgery and not wanting "corrupt" donor material. She last posted on the topic on 11/22. Then we never heard anything more on the topic. Strictly speaking, we can't rule that a success or failure. I see she's posted since then, but can't find any comments on her FMT. So, as far as I can tell, she tried it only one time. I would venture a guess that it didn't take, since I don't see a message about her being fully healed or in remission or something. Personally, I think this bolsters my belief that it can take multiple FMTs to get the good guys to take hold. My research on other folks' personal stories of FMT supports that claim (I have data on more than 50 people who tried it). In other words, I have first-hand data from folks who have done FMT who can clearly show that multiple infusions were required to achieve remission.
If one really has dysbiosis (which, I believe is the source of my LC), then, by introducing another microbiome via FMT, you're basically starting a war. The first wave of troops may or may not establish themselves, which is why you need to send in reinforcements (repeated FMTs). The reinforcements not only provide greater numbers, but also supplies (nutrients) for the existing good guys. Yes, it might nourish the bad guys, too. But if you're going to start a war, and your enemy can intercept your supply lines, you need to make sure you provide superior numbers in order to win the war.
As far as spouse or not....I have lots of data from folks who've done this at home. Most of them use a spouse, as it is the easiest, most convenient source of, um, the critical material. Not all have achieved remission. But more than half of those who have tried it, and pay attention to what they're doing, have at least some measure of success. Given that this treatment method is in the earliest stages, and the risks are low, that's enough for me to try it.
Great to hear from you MrFixit (and everyone else). A combination of lyme disease (known to cause mast cell degranulation thereby releasing inflammatory cytokine TNF-a), celiac disease, autoimmune thyroid, NSAID use and finally a long term course of antibiotics which likely impacted good gut flora and knocked out the last defense keeping everything manageable. Reduced gut flora seems to exacerbate other conditions which is why I think regaining gut flora should be a priority.
Zizzle, the main reasons for using spouses are 1) convenience, but also 2) as you mentioned, bacteria and other things have likely already been shared. If the spouse is having normal BMs and does not display other GI issues that means (theoretically) that their gut flora is sufficient to keep those things at bay and that protection should be transferred to you as well. Of course, if the spouse does display any GI issues they would be excluded from donating by the donor questionnaire that addresses such issues.
My research has also found that most practicioners (and home DIYers) prefer an intial burst of five to seven daily transplants followed with a week or two of transplants every few days and then once a week and then once a month, etc. Due to the limited nature of the available research, no data exists to confirm this strategy has any benefit but most prefer it based on theory and anectodal reports. Some even employ a pulsed approach similar to antibiotic use when targeting pathogens that modify their form or behavior when attacked (cyst forms, etc.) since the initial transplant may cause the pathogen to go into hiding, only to reemerge two weeks later. The initial burst of beneficial bacteria may knock down the pathogens but a lot of that bacteria may end up being transient and two weeks later when the bad guys reappear (wake up) there may not be enough residual good bacteria to continue the fight. There are plenty of reports of one transplant successfully populating the gut of a C Diff patient and one year later the gut is still colonized by good bacteria. However, since there is not much research out there, this is just a practice that some have employed in order to increase the odds of a successful treatment.
Along the lines of the immune system attacking good bacteria, it may make sense to attempt to calm immune/allergic responses to all things, including good bacteria. I think a few NAET sessions may achieve that and could increase the chances of a successful transplant.
Zizzle, the main reasons for using spouses are 1) convenience, but also 2) as you mentioned, bacteria and other things have likely already been shared. If the spouse is having normal BMs and does not display other GI issues that means (theoretically) that their gut flora is sufficient to keep those things at bay and that protection should be transferred to you as well. Of course, if the spouse does display any GI issues they would be excluded from donating by the donor questionnaire that addresses such issues.
My research has also found that most practicioners (and home DIYers) prefer an intial burst of five to seven daily transplants followed with a week or two of transplants every few days and then once a week and then once a month, etc. Due to the limited nature of the available research, no data exists to confirm this strategy has any benefit but most prefer it based on theory and anectodal reports. Some even employ a pulsed approach similar to antibiotic use when targeting pathogens that modify their form or behavior when attacked (cyst forms, etc.) since the initial transplant may cause the pathogen to go into hiding, only to reemerge two weeks later. The initial burst of beneficial bacteria may knock down the pathogens but a lot of that bacteria may end up being transient and two weeks later when the bad guys reappear (wake up) there may not be enough residual good bacteria to continue the fight. There are plenty of reports of one transplant successfully populating the gut of a C Diff patient and one year later the gut is still colonized by good bacteria. However, since there is not much research out there, this is just a practice that some have employed in order to increase the odds of a successful treatment.
Along the lines of the immune system attacking good bacteria, it may make sense to attempt to calm immune/allergic responses to all things, including good bacteria. I think a few NAET sessions may achieve that and could increase the chances of a successful transplant.
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ObsessedMrFixit
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Eric,
I'll be curious to hear what you think of NAET. I've tried it myself, but I think I'll hold off giving my opinion so as not to bias your opinion, thoughts, and impressions of it. For me, it took a year of very limited diet to get the inflammation and symptoms well-controlled. Man, it's been a long year.
Also, with your rather extensive list of maladies, I'm curious if D is your only symptom? (I'm assuming not, what with that rather lengthy list of diseases).
I'll be curious to hear what you think of NAET. I've tried it myself, but I think I'll hold off giving my opinion so as not to bias your opinion, thoughts, and impressions of it. For me, it took a year of very limited diet to get the inflammation and symptoms well-controlled. Man, it's been a long year.
Also, with your rather extensive list of maladies, I'm curious if D is your only symptom? (I'm assuming not, what with that rather lengthy list of diseases).
I'll post about any experiences with NAET. I'm open minded. I believe in the body's meridians and accupressure/puncture's ability to manipulate them to effect change within the body. I learned about NAET from a very intelligent internal med MD and he has had patients achieve positive outcomes with the therapy. I put it in the same basket as every other therapy discussed on this forum - works for some, not all and is likely never the total solution but possibly one more tool to help gain a foothold against this dis ease.
I'm guessing that you're talking about treatments for C. diff, because if you have data on that many MC patients who have tried the treatment, then you have really done your research. It works for C. diff, no question about it, because C. diff is obviously caused by a corrupt gut bacteria population.ObsessedMrFixit wrote:My research on other folks' personal stories of FMT supports that claim (I have data on more than 50 people who tried it). In other words, I have first-hand data from folks who have done FMT who can clearly show that multiple infusions were required to achieve remission.
Until proven otherwise, however, that's wishful thinking for MC, because there is no compelling evidence that the inflammation that causes MC is perpetuated because of a compromised gut bacteria balance. If that were the case, we wouldn't be able to achieve remission simply by avoiding the foods that cause us to produce antibodies.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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ObsessedMrFixit
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Nope. Talking about treatments for several varieties of colitis (ulcerative, crohn's, pancolitis, indeterminate, etc). Like I said, I am only aware of (now) three MC people ever trying FMT. From the sounds of things, both Eric and I have a similar story about the onset of the MC part (he's got a lot more going on than I do, overall, though). Since we both have evidence of dysbiosis, it stands to reason that restoring the balance of power in our gut could at least help us achieve remission. Or, in my case, restore normal digestive function so that I can eat more than meat & cruciferous veggies.
So, I'm gonna respectfully disagree with your assertion of the cause of MC and remission. We don't know but a drop in the bucket about the microbes in our gut, what all they do for us, or what all they (the bad guys) can do to us. Its certainly plausible, imho, that dysbiosis can lead to a compromised mucosal barrier. After all, if the good guys feed on our mucosa, it seems the bad guys could do the same, and tear it down in the process. Then we have good guys and bad guys in contact with our epithelium, which elicits an immune response, and our gut is now a war zone.
So, I'm gonna respectfully disagree with your assertion of the cause of MC and remission. We don't know but a drop in the bucket about the microbes in our gut, what all they do for us, or what all they (the bad guys) can do to us. Its certainly plausible, imho, that dysbiosis can lead to a compromised mucosal barrier. After all, if the good guys feed on our mucosa, it seems the bad guys could do the same, and tear it down in the process. Then we have good guys and bad guys in contact with our epithelium, which elicits an immune response, and our gut is now a war zone.
Well no wonder it takes so many "treatments". It's only going to work for the cases where dysbiosis is a causative factor.
What sort of success rate have you found for FMT treatments for colitis in general? There should certainly be some level of success, because undiagnosed bacterial infections (including C. diff) are probably much more common among people who have digestive system issues than is commonly believed (which I would guess is the basis of your treatment theory).
You're quite correct that medical science has explored only the tip of the iceberg concerning gut bacteria and the role that they play in human health, but I don't understand why you feel so strongly that your approach has such a strong chance of success.
Please don't misunderstand me — I'm probably even more inclined to think out-of-the-box than you are, and I try to be as open-minded as possible (within logical constraints), so I encourage your experimentation, because that's how we learn now methods. If I hadn't experimented with my own treatment, I might still be as sick as a dog, because my GI doc told me that there was nothing wrong with me (that was almost 13 years ago). But I'm curious why you feel so strongly about this approach when to date our/your experience has been so unproductive.
What am I missing here? Remember that MC is a unique disease (as IBDs go). It is very closely related to celiac disease (if you have read my book you should understand why) and while it is indeed an IBD (so is celiac disease), it's not as closely related to Crohn's or UC (at least not nearly as closely related as it is to celiac disease — and that's obviously my own opinion, not the current position of the mainstream medical community). Do fecal transplants work for celiac disease? No! Only diet changes will work for celiac disease.
That certainly does not mean that fecal infusions might not work in some MC cases, but the odds don't appear to be particularly encouraging. Or am I wrong about the odds? Despite my apparent skepticism, I'll guarantee you that I'm here to learn, just like everyone else, and I sincerely appreciate your input and your insight.
Tex
What sort of success rate have you found for FMT treatments for colitis in general? There should certainly be some level of success, because undiagnosed bacterial infections (including C. diff) are probably much more common among people who have digestive system issues than is commonly believed (which I would guess is the basis of your treatment theory).
You're quite correct that medical science has explored only the tip of the iceberg concerning gut bacteria and the role that they play in human health, but I don't understand why you feel so strongly that your approach has such a strong chance of success.
Please don't misunderstand me — I'm probably even more inclined to think out-of-the-box than you are, and I try to be as open-minded as possible (within logical constraints), so I encourage your experimentation, because that's how we learn now methods. If I hadn't experimented with my own treatment, I might still be as sick as a dog, because my GI doc told me that there was nothing wrong with me (that was almost 13 years ago). But I'm curious why you feel so strongly about this approach when to date our/your experience has been so unproductive.
What am I missing here? Remember that MC is a unique disease (as IBDs go). It is very closely related to celiac disease (if you have read my book you should understand why) and while it is indeed an IBD (so is celiac disease), it's not as closely related to Crohn's or UC (at least not nearly as closely related as it is to celiac disease — and that's obviously my own opinion, not the current position of the mainstream medical community). Do fecal transplants work for celiac disease? No! Only diet changes will work for celiac disease.
That certainly does not mean that fecal infusions might not work in some MC cases, but the odds don't appear to be particularly encouraging. Or am I wrong about the odds? Despite my apparent skepticism, I'll guarantee you that I'm here to learn, just like everyone else, and I sincerely appreciate your input and your insight.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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ObsessedMrFixit
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Short version: my symptoms aren't typical, one data point (Ginny) does not a pattern make, and, while your ideas are valid as anybody's who's as well-read (which is a tall order, I might add), I don't agree with all your conclusions. Some of 'em? Sure. Just not all. I have your book. Read it cover to cover. Enjoyed learning from it. But our world views are different, so our conclusions are different.
And that's exactly why I feel that your experiment is a good one, because if anyone should see positive results, you should. I sincerely hope that you will find the missing piece of the puzzle, and eventually you'll be able to prove that my misgivings are unfounded.ObsessedMrFixit wrote:Short version: my symptoms aren't typical
Well, technically of course, since both you and Eric are members of this board, we now have 3 data points. Of course, the jury is still out, but the evidence presented so far isn't nearly as favorable as any of us had initially hoped. A year or so ago, I had high hopes for this approach. I apologize for allowing my discouraged feelings to be visible.ObsessedMrFixit wrote:one data point (Ginny) does not a pattern make
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.