Poo Transplant resolved my ME :-) [Deleted]

[Stoo Brown]

Stoo Brown submitted a new resource:

Poo Transplant resolved my ME :-) - The Power of Poop

I am a 53 year-old white British male living in Scotland.
I had ME for ten years. Initially it was mild (although severe during relapses) and I was able to do quite a lot - although I had to retire from work. After about five or six years the ME got gradually worse and on average my ME would have been classified as 'moderate' although severe during relapses, which were quite frequent.
I read about Faecal Microbiome Transplant (FMT, poo transplants) including an obscure paper by Professor...

Read more about this resource...

 

[LittlestEngine]

Really incredible! I look forward to following the journey.

 

[Stoo Brown]

Thank you. I find it very remarkable myself. I am an engineer and scientist by training and I know that results as dramatic as that which I have experienced are rare and need to be carefully scrutinised. All the same, once I was very ill, now I am not. Those are th facts. It's terrific for my wife and I and I hope others may also find some benefit from my experience.

 

[JameDiagonal]

That sounds amazing! Looking forward to a better you.

 

[Stoo Brown]

Thank you. yes it is amazing. I cycled fifty miles on Wednesday - I'm completely back to my previous self. I hope my story is of some help to you.

 

[Cort]

That's amazing. thanks for providing some hope Stoo...

There is at least one fecal transplant study underway in ME/CFS.

Looking forward to this becoming more available.

 

[Stoo Brown]

Thank you. There are two relevant studies that I know of: one is a study of the microbiome in severely ill ME patients and the other is an actual FMT study in ME patients. Both are part funded by Invest in ME in the UK and are being carried out by Prof Carding at the Quadram Institute. See https://www.investinme.org/ce-gm-foundation.shtml and https://www.investinme.org/ce-proj4.shtml
What we need now is an FMT study for Long COVID!

 

[Hilary]

Hi Stoo - what a great result for you - hope you stay well
Just curious to know if you had a stool test done any time beforehand to look at the state of your gut microbes?

 

[Stoo Brown]

Hi Hilary, thanks for your comments. No, I didn't have any testing done at all, before or after. My transplant was done completely 'blind'.

 

[Hilary]

Thanks Stoo. I was advised over a year ago by Julian Kenyon at the Dove Clinic to have a transplant as he reckoned my gut flora are depleted/ out of balance (I'm not sure exactly what) but the test I did appeared to indicate that in fact my microbiome is not bad at all....... it was largely the cost that made me hesitate and then along came Covid.. It'll be interesting to see what Prof Carding finds out. I certainly haven't ruled it out.
Stay well!

 

[Stoo Brown]

I think your decision to get your microbiome profile and also to await the outcome of Prof Carding's trial are wise, particularly given the cost of the treatment. I hope evereything goes well for you and I'd love to hear more from you if you decide to try the treatment. Good luck

 

[Hilary]

Thanks Stoo. I'll report back if I decide to go ahead at any point - it won't be quite yet.

 

[Apo Sci]

Wild goose chase here. Research listed on the site is from 1995-2012. If there was anything to it then it would be more widely known. I can't even fathom a mechanism for fecal transplants affecting ME.

Microbiota & CFS / ME

The GI Microbiome and its role in Chronic Fatigue Syndrome: a Summary of Bacteriotherapy (2012)
Increased IgA responses to the LPS of commensal bacteria is associated with inflammation and activation of cell-mediated immunity in chronic fatigue syndrome (2012)
Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome (2009)
Gut inflammation in chronic fatigue syndrome (2010) Bacteriotherapy in CFS a retrospective review (1995)

About Fecal Transplant

The Patient Guide to Fecal Microbiota Transplant. Everything you've wanted to know about poop transplants but were afraid to ask.

thepowerofpoop.com

 

[Dom]

Did you have any stool tests before that highlighted any issues and if so can you list what they found? I have been meaning to get a comprehensive stool test for a very long time, as there could be all sorts of things in the body that don't show up on a blood test.

Fantastic you are back in the right place. Maybe this is another ME subset/mis diagnosis, who knows!

 

[Daffodil]

Hi All. I have had ME/CFS for 27 yrs. I have tried everything and seen many docs. I even had freakin neck surgery and still sick. In all these years of testing and treatment, the only thing that ever showed up positive in my testing was massive abnormalities in my gut. I am convinced that fecal transplants are my last chance at getting better.

The problem is, I have been housebound for so long, I dont know anyone whose stool I can use. Most people use family but I do not have any I can use. I have spent months trying to find someone, even offering $100 per poop but either no one wants to do it or out of the few that are willing, no one passes the screening questions.

I am now too poor to go to clinics in Europe to do this and I suspect I would need maybe 100 FMT's. I once ordered online from Microbioma.org. I got 6 enemas for approx $2000. I felt better for a little while so I know this could help me. I just cannot afford to order the amount I need.

There are companies that are cheaper that sell online but only ship in the US (I am in Canada) and getting it over the border would be impossible.

I wonder if anyone knows of anyone in or near Toronto who might help me with this.

THanks a lot
Daffodil

 

[Daffodil]

Did you have any stool tests before that highlighted any issues and if so can you list what they found? I have been meaning to get a comprehensive stool test for a very long time, as there could be all sorts of things in the body that don't show up on a blood test.

Fantastic you are back in the right place. Maybe this is another ME subset/mis diagnosis, who knows!

apparently the best one is either BIOMEFX or APERIOMICS

 

[Daffodil]

i had; Low bacterial diversity, very low mucosal IgA, massive overgrowth of streptococcus and enterococcus, very high sCD14, high kynurenic acid, and some other things I cannot remember. It is exactly the profile of people who benefit from fecal transplants.

 

[kinohi]

Stoo Brown submitted a new resource:

Poo Transplant resolved my ME :-) - The Power of Poop



Read more about this resource...
[/QUOTE
I do this w/ homemade water kefir , carefully done w/ a balance of organisms.

 

[Stoo Brown]

Wild goose chase here. Research listed on the site is from 1995-2012. If there was anything to it then it would be more widely known. I can't even fathom a mechanism for fecal transplants affecting ME.

Wild goose chase here. Research listed on the site is from 1995-2012. If there was anything to it then it would be more widely known. I can't even fathom a mechanism for fecal transplants affecting ME.

Yes, the research is thin on the ground. Ther is a reasonably large trial of FMT for ME currently in progress in the UK but suspended because of COVID. If this trial proceeds after the epidemic then it would contribute more peer-reviewed literature to the subject.
Whilst you describe this as a wild goose chase all I can conclude is that I was very sick and now I am not. Even I don't really know what to make of that.
It seems that the mechanism will revolve around the role of glial cells in the branch of the vagus nerve which connects to the bowel. Exactly if or how such a mechanism works is still to be elucidated but the "Vagus Nerve Hypothesis" by van Elzakker is instructive.

 

[Stoo Brown]

Hi All. I have had ME/CFS for 27 yrs. I have tried everything and seen many docs. I even had freakin neck surgery and still sick. In all these years of testing and treatment, the only thing that ever showed up positive in my testing was massive abnormalities in my gut. I am convinced that fecal transplants are my last chance at getting better.

The problem is, I have been housebound for so long, I dont know anyone whose stool I can use. Most people use family but I do not have any I can use. I have spent months trying to find someone, even offering $100 per poop but either no one wants to do it or out of the few that are willing, no one passes the screening questions.

I am now too poor to go to clinics in Europe to do this and I suspect I would need maybe 100 FMT's. I once ordered online from Microbioma.org. I got 6 enemas for approx $2000. I felt better for a little while so I know this could help me. I just cannot afford to order the amount I need.

There are companies that are cheaper that sell online but only ship in the US (I am in Canada) and getting it over the border would be impossible.

I wonder if anyone knows of anyone in or near Toronto who might help me with this.

THanks a lot
Daffodil

Hi Daffodil - I sympathise strongly with your problem. The two big obstacles to getting private FMT are the distance to the clinics and the cost of treatment. I'm in Scotland, so my poop is no good to you: to far away. Keep looking - don't give up hope.