FMT - Worth trying?

[Martin aka paused||M.E.]

What do you think? Would like to collect thoughts on that

(Yes I’m desperate)

 

[mattie]

What do you think? Would like to collect thoughts on that
(Yes I’m desperate)

So am I.
Have you read this thread;
https://forums.phoenixrising.me/index.php?threads/how-i-put-me-cfs-into-remission-even-better.61777/
I’ve tried it. Did the whole thing. Centrifuged, triple encapsulated DIY freshly made FMT pills. Excellent healthy and known donor.
Took at least 250 capsules over the course of 6 weeks.
Zero improvements. No ill effects either.

If you are in a SIBO subgroup it may be more helpful.

In my opinion the risks are low and for me this was worth trying.
Certainly could not hurt my microbiome as I have been given heavy courses of antibiotics in 2017.
At least my microbiome diversity should have been restored by this procedure.
But as I said, it has not helped with any of my ME or Dysautonomia symptoms.

 

[unicorn7]

I want to try it too, but I’m not severe.
Treatment for my gut has done a lot for me already, I’m just scared to undo al that again.

Did you have any sibo/bowel related problems Mattie? I read you were diagnosed with Cervical problems now? So that would be logical that FMT doesn’t work then?

 

[mattie]

Did you have any sibo/bowel related problems Mattie?

No I did not. But still wanted to try, because of the altered microbiomes found in PWME and some anecdotal improvement stories.

I read you were diagnosed with Cervical problems now?

That is correct. Too bad that diagnosis came after my little big FMT experiment.
Would I have tried FMT after being diagnosed with CCI/AAI? Probably not. Although as said: I could use a bit of probiotic overdose as my microbiota were wiped out by an incompetent belgian doctor in 2017.

So that would be logical that FMT doesn’t work then?

No. There is no way to know that fixing CCI/AAI will improve my ME or Dysautonomia symptoms.
Like Jennifer Brea said: it is certainly possible to have ME and cervical problems.
I will however halt all other experiments until I know for certain if I am a candidate for cervical fusion.

 

[tyson oberle]

I tried it for 2 months. FMT every other day from the same donor that Dr Sheppard in Tampa, Fl uses. No improvements at all. FMT works for c diff, but not always for ME./CFS

 

[Hufsamor]

I was planning on trying this as well.
So I got member of a Facebook group.
I asked how the results for me/cfs was,
and it's a long time ago,
but I believe they thought approximately
30% of me/cfs patients had improvements?

If I could use capsules I might have tried it anyway.
But I would have to get my own donor, get the donor tested, pick up the poo,....

 

[Thinktank]

I'm planning to do a full course of FMT this year to treat my dysbiosis and hopefully Crohn's disease / IBD. Just like Mattie my microbiome has been completely destroyed by the same Belgian doctor.

@mattie, You're speaking about pills, orally? Do i understand it correctly?

Has there been any study done on the efficiacy of oral vs rectal FMT?

 

[perrier]

I tried it for 2 months. FMT every other day from the same donor that Dr Sheppard in Tampa, Fl uses. No improvements at all. FMT works for c diff, but not always for ME./CFS

Dear Tyson
I'm so interested in your experience. I think you have mentioned this once before. Borody apparently had some success. Did Sheppard give you an antibiotic first; or did you do it without antibiotic?

And did you have severe GI problems

 

[Markus83]

How are the costs for this therapy?

 

[Hufsamor]

Has there been any study done on the efficiacy of oral vs rectal FMT?

Originally (some years ago) I heard strong opinions for rectal, against pills.
But it seems I have to reconsider?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6081131/

Case series of successful treatment with fecal microbiota transplant (FMT) oral capsules mixed from multiple donors,
even in patients previously treated with FMT enemas
(for recurrent Clostridium difficile infection)

 

[Hufsamor]

@Thinktank

https://jamanetwork.com/journals/jama/fullarticle/2664458
Does the clinical efficacy of fecal microbiota transplantation (FMT) in treating recurrent Clostridium difficile infection (RCDI) depend on the route of delivery?

Among adults with RCDI, FMT via oral capsules was not inferior to delivery by colonoscopy

 

[tyson oberle]

Dear Tyson
I'm so interested in your experience. I think you have mentioned this once before. Borody apparently had some success. Did Sheppard give you an antibiotic first; or did you do it without antibiotic?

And did you have severe GI problems

I did it without an antibiotic. I have bloating and hard stools.

 

[kangaSue]

I'm planning to do a full course of FMT this year to treat my dysbiosis and hopefully Crohn's disease / IBD. Just like Mattie my microbiome has been completely destroyed by the same Belgian doctor.

@mattie, You're speaking about pills, orally? Do i understand it correctly?

Has there been any study done on the efficiacy of oral vs rectal FMT?

There are a number of studies around (into different conditions, but mostly C diff) which have found frozen or frozen and thawed oral FMT capsules to be an effective way of doing FMT.

Openbiome have been supplying frozen capsules to GI's for more than a couple of years now for successfully treating C diff.

 

[kangaSue]

How are the costs for this therapy?

Not many countries allow it to be done other than for C diff. It is available in Australia for other conditions, costs can range anywhere from about $6,500 to $14,000 though.

 

[mattie]

..

@mattie, You're speaking about pills, orally? Do i understand it correctly?

I'll PM you some info.

 

[Hufsamor]

I was even seriously considering helminitic therapy.
But in the end i thought it was too much trouble for me to try.
It's not allowed in my country so it's a bit of a hassle to go through

 

[pibee]

Would like to collect thoughts on that

(Yes I’m desperate)

In this case start collecting poop , not thoughts

 

[Judee]

@Lassesen has a lot of info on FMT as well as microbiota affecting many conditions including ME/CFS on his website. HERE is just one page where he speaks about FMT.

I haven't had FMT but some of his probiotic suggestions are helping. I feel a slight shift in my symptoms but it is way too early to say for sure. Also everyone is different so I'm not giving names of products since what works for me may not work for you.

His site has a LOT of info that can be overwhelming so maybe if information overload induces PEM for you have someone read it and condense the info for you.

Edit at 6:01pm: I couldn't find this this morning but he talks about odds of remission with different treatments, one being ME/CFS with FMT on this page HERE.

It does sound like he is still urging caution though for these treatments because of lack of core control studies.

 

[Judee]

Just read this on @Lassesen's site which seems to be a summary of his theory on microbiome as a basis of our illness.

The simplest evidence that the root cause is a persistent microbiome dysfunction comes from dozen of reports of immediate remission from symptoms after a fecal matter transplant — unfortunately, many find that the symptoms returned in 2- 6 months. The bacteria consortium causing the symptoms were able to re-establish themselves. The unresolved challenge is how to stop this bacteria consortium.

 

[kangaSue]

The bacteria consortium causing the symptoms were able to re-establish themselves. The unresolved challenge is how to stop this bacteria consortium.

One study I read (into Ulcerative Colitis I think) suggested the microbiome alteration in this from FMT holds for up to 21 weeks so I guess one solution would be to do a maintenance FMT procedure every 4 months or so.