[DavidHC]

Has anyone here done one him/herself, or known of anyone who has had one done? To be precise, I'm asking about people with our kind of problems, with PN/SFN.

Of late I've been researching how to do one at home - very simple - and considering doing one if I'm not healed or much better at the latest by the summer or fall. It's important to mention that I believe my SFN is due to an infection leading to my immune system being compromised/damaged, and the hope is that it's reversible. The idea is that if I don't remove the cause, the immune issue, the infection, etc., my nerves will never be able to heal properly. And having a healthy microbiom is at the heart of all this, so goes the theory.

[baba222]

Originally Posted by DavidHC

Has anyone here done one him/herself, or known of anyone who has had one done? To be precise, I'm asking about people with our kind of problems, with PN/SFN.

Of late I've been researching how to do one at home - very simple - and considering doing one if I'm not healed or much better at the latest by the summer or fall. It's important to mention that I believe my SFN is due to an infection leading to my immune system being compromised/damaged, and the hope is that it's reversible. The idea is that if I don't remove the cause, the immune issue, the infection, etc., my nerves will never be able to heal properly. And having a healthy microbiom is at the heart of all this, so goes the theory.

I pm'd you.

[Marie33]

[QUOTE=DavidHC;1194571]Has anyone here done one him/herself, or known of anyone who has had one done? To be precise, I'm asking about people with our kind of problems, with PN/SFN.

Of late I've been researching how to do one at home - very simple - and considering doing one if I'm not healed or much better at the latest by the summer or fall. It's important to mention that I believe my SFN is due to an infection leading to my immune system being compromised/damaged, and the hope is that it's reversible. The idea is that if I don't remove the cause, the immune issue, the infection, etc., my nerves will never be able to heal properly. And having a healthy microbiom is at the heart of all this, so goes the theory.

Hi David, I suffer with SFN , its going on to 5 years since I was dx'ed.I believe my SFN is due to an infection leading to my immune system being compromised/damaged too!!! I am hoping that my nerves will "heal" . Mine is still Idiopathic, sigh, so frustrating..so therefore if there is no "cause" then they cant treat it..How long have you been suffern with this beast..What do you take for your pain? I take 300 mgs Lyrica, doesn't work.
What is a fecal transplant??

[SylvieM]

Originally Posted by DavidHC

Has anyone here done one him/herself, or known of anyone who has had one done? To be precise, I'm asking about people with our kind of problems, with PN/SFN.

Of late I've been researching how to do one at home - very simple - and considering doing one if I'm not healed or much better at the latest by the summer or fall. It's important to mention that I believe my SFN is due to an infection leading to my immune system being compromised/damaged, and the hope is that it's reversible. The idea is that if I don't remove the cause, the immune issue, the infection, etc., my nerves will never be able to heal properly. And having a healthy microbiom is at the heart of all this, so goes the theory.

Fecal transplants are not simple or a DIY project, unless you wish to risk infection or death. So far the only successful use of fecal transplants (of TESTED freeze-dried donor stool in an acid resistant capsule....which is swallowed)..is only for one specific bacterial infection. I've read it may hold promise for other disorders, such as Parkinson's Disease, but the mechanisms are now unknown.

As far as I can tell you are not yet diagnosed with an immunological disorder, and if you were, messing with gut bacteria would not address it. Testing is a time-consuming process....but necessary to determine whether autoimmune disease may underly your neuropathy.

[DavidHC]

Actually:

1. There are plenty of people who undergo the DIY method of enema. You can easily search the web for many such cases. There are medical studies with patients being required to self-administer home FMTs via enema. For example, this one, with 100% success rate: http://www.ncbi.nlm.nih.gov/pubmed/20117243. Some studies even include self-administered home enema as part of the continuing methodology, initially using a colonoscopy. There have been no recorded cases of infection and certainly not death.

2. There are multiple methods used for transplantation in clinical setting, the most common being colonoscopy and the second being nasoduodenal. I've read most or almost all the studies to date but haven't read a single one using the method you note, though it may have been the case. But it is certainly not the only one or in any way the most common. See here, for example:http://www.hopkinsmedicine.org/gastr...lantation.html.

3. FMT has been successfully studied in both Ulcerative Colitis and C dif., and from what I've heard out of Europe studies are being conducted or will be for other IBDs. You can Google and find many clinical studies.

4. The statement "messing with gut bacteria would not address it [i.e., an autoimmune issue]" has no evidence to support it, and in fact seems to fly in the face of the fact that 70% or so, as they say, of our immune system is in the gut. For my part, I just don't know, maybe it will, maybe it won't. I have no evidence in either direction, but I will note that so far it has reversed immune and/or inflammatory issues relating to the gut directly with astronomically positive results, 90% and higher.

Originally Posted by SylvieM

Fecal transplants are not simple or a DIY project, unless you wish to risk infection or death. So far the only successful use of fecal transplants (of TESTED freeze-dried donor stool in an acid resistant capsule....which is swallowed)..is only for one specific bacterial infection. I've read it may hold promise for other disorders, such as Parkinson's Disease, but the mechanisms are now unknown.

As far as I can tell you are not yet diagnosed with an immunological disorder, and if you were, messing with gut bacteria would not address it. Testing is a time-consuming process....but necessary to determine whether autoimmune disease may underly your neuropathy.

[DavidHC]

Hi Marie,

I'm sorry to hear that you've been suffering for so long. It truly is a beast, an unpredictable and terrible one no doubt. I'd be curious to hear about your situation, say if you have your story posted somewhere. Here is mine, if you're interested: http://neurotalk.psychcentral.com/thread229734.html.

I don't take any meds, have refused them all, just the supplements noted/attached to my posts. So far so good, considering...

Here are some links explaining fecal transplants:

http://www.hopkinsmedicine.org/gastr...lantation.html

http://thepowerofpoop.com/

There are many other sites, medical and otherwise about the topic.

[QUOTE=Marie33;1194804]

Originally Posted by DavidHC

Has anyone here done one him/herself, or known of anyone who has had one done? To be precise, I'm asking about people with our kind of problems, with PN/SFN.

Of late I've been researching how to do one at home - very simple - and considering doing one if I'm not healed or much better at the latest by the summer or fall. It's important to mention that I believe my SFN is due to an infection leading to my immune system being compromised/damaged, and the hope is that it's reversible. The idea is that if I don't remove the cause, the immune issue, the infection, etc., my nerves will never be able to heal properly. And having a healthy microbiom is at the heart of all this, so goes the theory.

Hi David, I suffer with SFN , its going on to 5 years since I was dx'ed.I believe my SFN is due to an infection leading to my immune system being compromised/damaged too!!! I am hoping that my nerves will "heal" . Mine is still Idiopathic, sigh, so frustrating..so therefore if there is no "cause" then they cant treat it..How long have you been suffern with this beast..What do you take for your pain? I take 300 mgs Lyrica, doesn't work.
What is a fecal transplant??

[kiwi33]

DavidHC, I can't find any accounts of faecal transplants being tried (successfully or otherwise) for treatment of PN/SFN.

The title of this (admittedly n=1) case report poster may be worth considering http://www.pmrjournal.org/article/S1...918-6/abstract.

[SylvieM]

Originally Posted by DavidHC

Actually:

1. There are plenty of people who undergo the DIY method of enema. You can easily search the web for many such cases. There are medical studies with patients being required to self-administer home FMTs via enema. For example, this one, with 100% success rate: http://www.ncbi.nlm.nih.gov/pubmed/20117243. Some studies even include self-administered home enema as part of the continuing methodology, initially using a colonoscopy. There have been no recorded cases of infection and certainly not death.

2. There are multiple methods used for transplantation in clinical setting, the most common being colonoscopy and the second being nasoduodenal. I've read most or almost all the studies to date but haven't read a single one using the method you note, though it may have been the case. But it is certainly not the only one or in any way the most common. See here, for example:http://www.hopkinsmedicine.org/gastr...lantation.html.

3. FMT has been successfully studied in both Ulcerative Colitis and C dif., and from what I've heard out of Europe studies are being conducted or will be for other IBDs. You can Google and find many clinical studies.

4. The statement "messing with gut bacteria would not address it [i.e., an autoimmune issue]" has no evidence to support it, and in fact seems to fly in the face of the fact that 70% or so, as they say, of our immune system is in the gut. For my part, I just don't know, maybe it will, maybe it won't. I have no evidence in either direction, but I will note that so far it has reversed immune and/or inflammatory issues relating to the gut directly with astronomically positive results, 90% and higher.

Hi,

You cite studies where, as I note, it is used only for a specific bacterial infection: clostrodium difficile (CDI), which can range from causing diarrhea to a bacterial colitis (different than an autoimmune ulcerative colitis). It has been used experimentally for the latter, and other conditions as well. There are as yet no good data to support positive outcomes in experimental runs, though as I said, it may be promising. In any event, a donor must be tested to ensure they are not a carriers that may harm a recipient. Two deaths I read about were in a single, controlled study reported by ScienceDaily. I have read of others.

I know you wish to find effective treatment for your PN, as we all do, but I'll mention again, it is really necessary to know what you are dealing with. I again encourage you to find out if you have an underlying autoimmune disorder. You may then be able consider treatment s that are known to be effective for it, like IVIG.

My statement about "messing up the gut" comes from respect for its complexity and clear importance in health.

[February]

A lot goes on into clinical trials that you can never read about. There are many preliminary requirements, too many to list, on a case by case basis that are documented privately.

With this particular study, I would ask if I were safe from contracting campylobacter jenjuni or cytomegalovirus, two causes of Guillian Barre Syndrome. SFN is the worst thing until you compare it to large fiber, both sensory and motor, cranial, autonomic all together like in GBS. Please be careful.

[DavidHC]

Hi SylvieM,


I noted there are other studies and that you need just look for them. Again, these are studies of its use for ulceritive colitis. Here is a very prominent one, but it's not the only one: http://www.ncbi.nlm.nih.gov/pubmed/25857665. The studies have been successful, and it's not at all true that "there is no good data to support positive outcomes" in other conditions, as they leading scientists and physicians would say. If you note, their expert and clinically supported conclusion is: "FMT induces remission in a significantly greater percentage of patients with active UC than placebo, with no difference in adverse events." This is not the only study with positive outcomes like this. And like I said, from what I've heard from out of Europe, studies are being successfully conducted in all sorts of other conditions, primarily IBDs and at least ones study apparently on IBS.

And well, yes, of course the donors should and would be tested, and this is even what DIY enema protocols do, in fact often more thoroughly as long as they're willing to spend the money for additional more thorough testing.

If you have studies for deaths, please cite them. ScienceDaily is incendiary and not particularly open or well researched and supported.

I would think that respect for the complexity of the gut would lead one to show humility and withhold judgment when there is evidence especially to the contrary, or even no evidence at all. That's the position I take, namely, that it may or may not lead to improvement or harm, that it may help or not, etc., rather than claim without evidence that "messing with gut bacteria would not address it."

The use of FMT is 'experimental' for all conditions right now, though it is more advanced in Europe and Asia, and has been in use for longer. In North America even though it's approved for C diff., it's still considered experimental and only done in very specific C diff. cases. There are whispers that it will soon be approved for IBD as well, certainly for UC, given the overwhelmingly positive evidence.

There is no clinical evidence that it works for PN and SFN, sure, but I wasn't claiming that. I also have gut issues and am open to the possibility of it working, since there's no evidence to the contrary, quite the opposite taken generally.

Originally Posted by SylvieM

Hi,

You cite studies where, as I note, it is used only for a specific bacterial infection: clostrodium difficile (CDI), which can range from causing diarrhea to a bacterial colitis (different than an autoimmune ulcerative colitis). It has been used experimentally for the latter, and other conditions as well. There are as yet no good data to support positive outcomes in experimental runs, though as I said, it may be promising. In any event, a donor must be tested to ensure they are not a carriers that may harm a recipient. Two deaths I read about were in a single, controlled study reported by ScienceDaily. I have read of others.

I know you wish to find effective treatment for your PN, as we all do, but I'll mention again, it is really necessary to know what you are dealing with. I again encourage you to find out if you have an underlying autoimmune disorder. You may then be able consider treatment s that are known to be effective for it, like IVIG.

My statement about "messing up the gut" comes from respect for its complexity and clear importance in health.