Author Topic: FMT (fecal microbiota transplant) - the ultimate answer?  (Read 4381 times)

Cursed

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FMT (fecal microbiota transplant) - the ultimate answer?
« on: February 02, 2020, 11:44:09 AM »
So here I am. I've been suffering with CFS and POIS for more than 5 years with little hope in sight. I always knew about the FMT as an option, but I think I'm gonna finally pull the trigger. I believe that for those of us like me, who feel that gut is their primary cause, it could potentially be a cure. There are a lot of unknowns in the FMT world and it's a risky procedure. It can sometimes result in serious side effects and very rarely death, so nobody should undergo this without serious consideration, but I don't have much to loose anymore so I think I'm gonna do it.

I feel very clearly that whatever helps my gut, helps with general CFS symptoms, POIS and PE and vice versa. If I do something to upset my gut, POIS symptoms will be SO much worse. It's interesting that I get more easily aroused and my PE is worsened if I eat anything that upsets the gut, but it makes sense. I think the problem (at least for me) lies in the compromised gut barrier (aka leaky gut), and vagus nerve irritation, which I'm pretty sure is an underlying cause of PE, ectopic heart beats, brain fog, etc.

As to how the POIS symptoms are caused, I don't know. Obviously, nobody does. My guess is it's either autonomic/vasomotor dysfunction (judging by improvement with acetylcholinesterase inhibitors by some members or that some only get symptoms with masturbation, but not sex) or some other neuroimmune dysregulation due to antibodies to receptors or whatnot. Keep in mind, what is thought of as autoimmune diseases may be something different. E.g., there are reports of "transmission" of autoimmune diseases like rheumatoid arthritis, or immune thrombocytopenia by fecal transplant. There are also reports of these same illnesses being cured by FMT. So the theory of body just randomly attacking its tissues or receptors for no apparent reason is likely incorrect and the so called autoimmune diseases may be caused by dysregulation of gut microbiota and/or by pathogens/pathobionts in the gut either through molecular mimicry (body is attacking microbes, but is also attacking a cell that's similar to that microbe), or some other type of immune activation.

Alternatively, POIS symptoms could be caused by afferent vagus nerve sensing inflammation in the gut (or somewhere else in ghe body), sending signals to the brain, which induces microglia activation and maybe causes some kind of neuro-hormonal dysregulation, etc which may only manifest in the extremes of autonomic function (like ejaculation).

All in all, it's not necessary to know how exactly it all works if you're trying to address the underlying issue, which in my case is the gut. I have done a lot of research over the years and this the only thing that makes sense to me. I'm not saying that everyone has the same problems. Obviously, only a minority here have CFS. That being said, I doubt that there's anyone here who is 100% healthy and that the only problem that they have is POIS. Maybe I'm wrong, but that's how I see it.

Has anyone here tried FMT?

b_jim

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #1 on: February 02, 2020, 05:10:58 PM »
I often said my Pois seems to start on my gut.
FMT might be a cure for a lot of diseases in the next 10 years. Why not Pois.

But FMT is a dangerous cure. You can catch diseases of the giver.
IT MUST BE DONE UNDER CONTROLE BY PROFESSIONAL DOCTOR

Home-made FMT are pure suicide.
We can talk about this  but Not any pois sufferer must consider home-made FMT as a cure.
« Last Edit: February 02, 2020, 05:31:34 PM by b_jim »
Taurine = Anti-Pois

demografx

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #2 on: February 02, 2020, 09:43:03 PM »
b_jim, thanks for the cautious warning!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Aladin

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #3 on: February 03, 2020, 03:55:33 PM »
I'm very interested in your results! I'm a believer in the gut-theory!
Please keep us updated!

Cursed

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #4 on: February 04, 2020, 08:04:24 AM »
Yes, DIY transplant is dangerous. It can be done safely, but there needs to be a lot of testing done on the donor, and even then, you never know what can happen, even when it's done by professionals. I'm certainly not advocating anyone to go and do this themselves. We still know so little, but I agree that in 10-20 years this will be an actual cure for a lot of diseases, maybe in a more acceptable form like capsules or even cultured bacterial strains. There definitely is a reason to be hopeful.

I will keep you updated with my results. This is probably gonna happen in the next 4 months.

demografx

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #5 on: February 04, 2020, 03:05:32 PM »
Thanks, Cursed
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Vandemolen

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #6 on: February 04, 2020, 09:14:56 PM »
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

LookingForACure

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #7 on: March 26, 2021, 11:44:00 PM »
Yes, DIY transplant is dangerous. It can be done safely, but there needs to be a lot of testing done on the donor, and even then, you never know what can happen, even when it's done by professionals. I'm certainly not advocating anyone to go and do this themselves. We still know so little, but I agree that in 10-20 years this will be an actual cure for a lot of diseases, maybe in a more acceptable form like capsules or even cultured bacterial strains. There definitely is a reason to be hopeful.

I will keep you updated with my results. This is probably gonna happen in the next 4 months.

Cursed, did you end up going through with the FMT? I have been considering it myself, but am scared of the risks. There are a number of horror stories out there of people getting worse.

Cursed

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #8 on: March 27, 2021, 07:51:53 AM »
So my initial plan was to go to the clinic in Germany last spring, but that had to be cancelled due to Covid19. They still don't accept patients, as far as I know.

I found a different option. There's a guy in Spain that found a good donor and can send you frozen samples for DIY. At first I ordered 6 enema bottles. I've only used 4 of them, I think. Every time I did an enema it would make things much worse, but the symptoms went back to baseline more or less after that. Then I ordered 120 capsules. Unfortunately that didn't work either. Although they are much gentler on the digestive system and cause less unwanted effects, they still only caused side effects and nothing positive came out of it. I took 10 capsules the first time, and then after a few days took another 20. I had quite a bit of diarrhea, but it went away. I may try more capsules in the near future, but I'm not sure yet. So.. a rather disappointing experience. I'm at a complete loss, because I'm suffering every single day whether in POIS or not and I just don't know what to do anymore.

I'm still considering going to the clinic in Germany, but I'm not sure when it's gonna be possible.

Mushnikk

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #9 on: March 27, 2021, 07:56:19 AM »
So my initial plan was to go to the clinic in Germany last spring, but that had to be cancelled due to Covid19. They still don't accept patients, as far as I know.

I found a different option. There's a guy in Spain that found a good donor and can send you frozen samples for DIY. At first I ordered 6 enema bottles. I've only used 4 of them, I think. Every time I did an enema it would make things much worse, but the symptoms went back to baseline more or less after that. Then I ordered 120 capsules. Unfortunately that didn't work either. Although they are much gentler on the digestive system and cause less unwanted effects, they still only caused side effects and nothing positive came out of it. I took 10 capsules the first time, and then after a few days took another 20. I had quite a bit of diarrhea, but it went away. I may try more capsules in the near future, but I'm not sure yet. So.. a rather disappointing experience. I'm at a complete loss, because I'm suffering every single day whether in POIS or not and I just don't know what to do anymore.

I'm still considering going to the clinic in Germany, but I'm not sure when it's gonna be possible.

Which clinic in Germany were you planning on going to? Did you have an appointment already?

Cursed

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #10 on: March 27, 2021, 08:44:58 AM »
Leipzig, Dr. Koppen.

LookingForACure

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #11 on: March 27, 2021, 11:36:02 AM »
So my initial plan was to go to the clinic in Germany last spring, but that had to be cancelled due to Covid19. They still don't accept patients, as far as I know.

I found a different option. There's a guy in Spain that found a good donor and can send you frozen samples for DIY. At first I ordered 6 enema bottles. I've only used 4 of them, I think. Every time I did an enema it would make things much worse, but the symptoms went back to baseline more or less after that. Then I ordered 120 capsules. Unfortunately that didn't work either. Although they are much gentler on the digestive system and cause less unwanted effects, they still only caused side effects and nothing positive came out of it. I took 10 capsules the first time, and then after a few days took another 20. I had quite a bit of diarrhea, but it went away. I may try more capsules in the near future, but I'm not sure yet. So.. a rather disappointing experience. I'm at a complete loss, because I'm suffering every single day whether in POIS or not and I just don't know what to do anymore.

I'm still considering going to the clinic in Germany, but I'm not sure when it's gonna be possible.

I'm sorry to hear that your trial was unsuccessful :(. I assume you used microbioma.org?

What side effects did you experience and how long did they last? Was this a digestive response or did you find that your POIS/cfs symptoms also worsened?

Cursed

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #12 on: March 27, 2021, 12:16:53 PM »

I'm sorry to hear that your trial was unsuccessful :(. I assume you used microbioma.org?

What side effects did you experience and how long did they last? Was this a digestive response or did you find that your POIS/cfs symptoms also worsened?

That is correct.

As for side effects, enema caused a massive worsening of all my symptoms, mostly CFS/pois, but also digestive. Capsules were quite a bit better, but caused digestive upset, and increase in all the other symptoms. I think they lasted about a week, everytime I did enema or took capsules so not the end of the world, but the enema caused a big increase in depreasion and muscle weakness, brain fog, which is really difficult to handle since I'm pretty much always at the limit, whereas capsules had a much less negative effects, fortunately.

Actually I don't know if I can say with 100% certainty that I'm back to baseline, since there's a lot of natural variation in severity, which is unpredictable, and currently I'm feeling pretty bad, but it's likely not caused by FMT.

Miyagi

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #13 on: March 29, 2021, 08:05:03 AM »
I find it interesting that an enema would increase your pois symptoms, seems to indicate to me a relationship between your bowel or gut environment and pois.

Cursed

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #14 on: March 29, 2021, 08:45:15 AM »
I find it interesting that an enema would increase your pois symptoms, seems to indicate to me a relationship between your bowel or gut environment and pois.

Yes, absolutely. That's exactly the reason why I decided to do FMT, in the first place, because I feel a very strong effect on my POIS symptoms in terms of what I eat, or what supplements I use, etc, so there's no question that there's a connection there.

At present, I only see two or three possibilities. It's either microbiota itself, or some kind of viral infection of the gut lining, or an infection of the vagus nerve. Maybe there are other possibilities, like structural/spinal issues affecting the spinal cord, but that doesn't seem to apply to me.

LookingForACure

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #15 on: March 29, 2021, 03:42:10 PM »
Hi Cursed,

I believe that my issue may be rooted in the gut for similar reasons. I don't feel especially sensitive to supplements (other than being a little more vulnerable than average to the placebo response...) but food definitely can have a large impact on the way I feel. I've also had substantial albeit temporary benefits from antimicrobials, enough so that I actually had a two month period where I'd consider my symptoms reduced by 50% or so. Finally, the microbiome is being linked to so many conditions, especially autoimmune, that even without any specific evidence it seems like a plausible causative factor.

FMT is in its early days though, there is still research to be done and from what I've seen, results are currently very mixed. Many people report long-term detrimental effects, so I suppose you are lucky you at least avoided that fate. I've decided I'm probably not going to proceed at this time, and may consider it as an option in a few years when the science has improved and better donor sources have been identified. Frustrating, because FMT seems like the closest thing to a potential miracle cure that there is. Guess we will have to keep plodding along...

Cursed

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Re: FMT (fecal microbiota transplant) - the ultimate answer?
« Reply #16 on: March 29, 2021, 05:25:21 PM »
Hi, yes, I wouldn't recommend this to anyone who still has at least some quality of life, can work and socialise to some extent. My situation is different. I cannot work, often cannot socialise and have zero quality of life. I'm essentially a dead man, so for me the risks are acceptable, because I simply have no other choice.