Faecal Transplant in UK

[bertiedog]

I did a Google search on experiences of people at the Taymouth and there was a blog post from a woman who used the Taymouth and had FMT. I think she was from the USA. She spent thousands of pounds but after several months she was no better. There was another post a year later and it hadn't helped her at all so all that money was wasted.

Pam

 

[Notjustfatigue]

In general these people will have had their FMT through a hospital where the sample is carefully tested for pathogens before being given to the patient. This isn't the same at all as what the Taymouth clinic do. I don't know about the Dove Clinic cos haven't looked that up but I did carefully research the Taymouth and it's nothing like the way the NHS treats patients with C Diff.

Pam

They, at least, says that in their website:

"TESTING PROCESS
The Taymount banks implants taken from our regularly screened donors, who have undergone a full detailed list of laboratory tests every 3 months. All donors are obliged to follow a high-nutrient, probiotic and pre-biotic rich diet. All are non-smokers, with a slim body disposition, free from mental illness, have a well-functioning digestive system and with no antibiotics in their recent history."

Do you have any other reference?.

Hugs

 

[bertiedog]

But it is nothing like the full transplant the NHS uses for C Diff. It's more like a pellet they produce. If you look carefully at their site where they explain their technique you will see what I mean.

Pam

 

[Notjustfatigue]

I did a Google search on experiences of people at the Taymouth and there was a blog post from a woman who used the Taymouth and had FMT. I think she was from the USA. She spent thousands of pounds but after several months she was no better. There was another post a year later and it hadn't helped her at all so all that money was wasted.

Pam

I more or less have a similar idea. I count with if that works, i should reply at least next year (and probably so many more). I have UK very more near (less expensive travel) and would share at home and taxis with my other two mates, so it would be so expensive. And thinking that some moths i even waste more than 350€ in supplements and pills, it doesn´t seen a crazynees for a year much better.

Hugs

 

[Notjustfatigue]

But it is nothing like the full transplant the NHS uses for C Diff. It's more like a pellet they produce. If you look carefully at their site where they explain their technique you will see what I mean.

Pam

For real i will do. Thank you for you advice.

Hugs

 

[kangaSue]

Do you then think they could be a good stuff por ME patients???

It's hard to say who will benefit from it as there's few studies into specific conditions. Anecdotally (and regardless of the condition), it looks like about 25% of people have good response, 25% have some improvement, and about 50% get no benefit from it.

Those outcomes may be being improved on by those continuing FMT for a longer time frame but again, ther's little to no research available to compare.

Just is commercialize in UK for ME (among other neurologic illnesses). In rest of couintries it used to be legal just to threat Clostridum Difficile.

Yes, it's widely used in many countries as an approved treatment for C diff and far superior to antibiotics.

 

[kangaSue]

In general these people will have had their FMT through a hospital where the sample is carefully tested for pathogens before being given to the patient. This isn't the same at all as what the Taymouth clinic do. I don't know about the Dove Clinic cos haven't looked that up but I did carefully research the Taymouth and it's nothing like the way the NHS treats patients with C Diff.

Pam

If you call a state of health questionaire, testing for some common serious conditions which any blood donor would be screened for too, and a stool analysis to be "carefully tested for pathogens", then yes, that's what they do. Nothing that your average joe couldn't arrange to be done for their proposed stool donor either.

 

[Notjustfatigue]

It's hard to say who will benefit from it as there's few studies into specific conditions. Anecdotally (and regardless of the condition), it looks like about 25% of people have good response, 25% have some improvement, and about 50% get no benefit from it.

Those outcomes may be being improved on by those continuing FMT for a longer time frame but again, ther's little to no research available to compare

@kangaSue do you mean that we have 25% chance of recovery and 25% of some improvement. If is like that is more than thinkable. I obviously if stay recover for one year (or with a big improvement) i will do another cycle of 10 FMT nearly without thinking.


Thank you so much.

Hugs

 

[kangaSue]

@kangaSue do you mean that we have 25% chance of recovery and 25% of some improvement. If is like that is more than thinkable. I obviously if stay recover for one year (or with a big improvement) i will do another cycle of 10 FMT nearly without thinking.


Thank you so much.

Hugs

As I said, it was anecdotal and I haven't kept a track of it for the last couple of years but yes, that is what I read, somewhere on thepowerofpoop.com website.

If you want to view that from the negative, you've got about a 50/50 chance of blowing your money for no result.

There is an interesting article about why it may fail on the above website;
https://thepowerofpoop.com/why-fmt-doesnt-always-work/

 

[Notjustfatigue]

@kangaSue So thanks for the links. In any time i have (with a little more cognitive capacities than a lettuce ) i will read it with calm. They seem interestant.

Always thanks form go out a limb with this thread and give us a so positive vision of the situation.

Do you know any one who had made them in UK in any of the two clinics we ask for, or in US, Australia or whatever, in clinic or at home (DIY).


Huges

 

[kangaSue]

@kangaSue So thanks for the links. In any time i have (with a little more cognitive capacities than a lettuce ) i will read it with calm. They seem interestant.

Always thanks form go out a limb with this thread and give us a so positive vision of the situation.

Do you know any one who had made them in UK in any of the two clinics we ask for, or in US, Australia or whatever, in clinic or at home (DIY).


Huges

No, not personally. Dr Thomas Borody claimed he was able to achieve permanent long term cures with fecal transplant on a number of ME/CFS patients but I've not seen his results replicated by others, either clinically or anecdotally.

Dr Kenny De Meirleir got short term benefits with fecal transplant on a number of ME/CFS patients but found that these benefits disappeared after a few months. Some other research found that the positive changes in gut bacteria from doing FMT (for C diff at least) can last for about 21 weeks which would support the need to do maintenance treatments too.
https://www.medicalnewstoday.com/articles/291532.php

There's a lot of links to other FMT threads at reply #36 in this thread;
https://forums.phoenixrising.me/index.php?threads/diy-fecal-transplant-would-you-try-it.52562/page-2

 

[Notjustfatigue]

@kangaSue, thank you so much for your quick and diligent answers.

One thing. Then, do think this have a good risk/reward ratio or not. Will you test it yourself.

Thanks very much for the link of the another post. @Hip recopilation had very good apparience, so i feel like i would find very important information in those links.


Hugs

 

[Scoobieworld]

I had two week course from Taymont and recovered for two months then benefit disappeared. Tried a further weeks implants but that did no good. Maybe if you could have implants daily for a year you would have more success. There is also clinic in South America

 

[Hip]

I had two week course from Taymont and recovered for two months then benefit disappeared.

Just out of interest, can you quantify where you were on the ME/CFS scale of very severe, severe, moderate, mild, remission, before your treatment (before the FMT treatment put you into remission for 2 months).

 

[Notjustfatigue]

I had two week course from Taymont and recovered for two months then benefit disappeared. Tried a further weeks implants but that did no good. Maybe if you could have implants daily for a year you would have more success. There is also clinic in South America

If i am not wrong i think one of both (now i can´t remember if it was Taymount or Dove), let you carry some samples to do some FMT at home. If it was possible at least to take to Spain for making two a weeks for two months (8 samples) it would be so thinkable about. I am too bad and can´t afford to travel a lot (i think even twice a month would be so much for me, but i expected that having taking the two weeks first cycle, the benefis allow me to do it).

Hugs

 

[Notjustfatigue]

Just out of interest, can you quantify where you were on the ME/CFS scale of very severe, severe, moderate, mild, remission, before your treatment (before the FMT treatment put you into remission for 2 months).

Please, if you would able to do it i will appreciate a lot, because its so different to spend 6000€ to be fully recover during two moths and recover all my previous life (especially snowboarding, having social life, going to dance, etc), that have just a little improvement.

My state now is mostly severe with some crashes of severe especially in winter season (24 hours bedbound, in completly darkness and with earplugs). Anyway my light sensitive is usually is very intense (even in severe state), especially with artificial light (i wear sunglasses all day, everyday).

 

[kangaSue]

@Notjustfatigue Something I've come across recently that might be worth a try first if diarrhea is an issue is a xyloglucan product. Or maybe it could even be used as an adjunct to FMT

Xyloglucan is a film-forming protein based mucoprotectant that puts a liner on the intestinal mucosal layer which is then said to improve the intestinal mucosa resistance to pathologic damage. It's only marketed in Europe by the looks of things and was previously only promoted as an anti-diarrheal product, starting out as gelatin tannate before adding xyloglucan to it and now it's being promoted as an IBS treatment.

Anything that might stop or reduce intestinal permeability could go a long way to moderating symptoms regardless.

One paper said of this;
https://www.tandfonline.com/doi/abs/10.1080/17474124.2018.1378573
[Xyloglucan is a water-soluble, polysaccharide hemicellulose that is extracted from the seeds of the tamarind tree (Tamarindus indica), and is not broken down by digestive enzymes. It acts as a film-forming barrier over the intestinal mucosa, helping to reduce the effect of pathogens and to improve the function of the intestinal barrier. It is often combined with gelatin (tannate) to prolong its availability within the intestine.

Gelatin tannate and xyloglucan are promising mucoprotectants forming a protective layer over the intestinal mucosa, which can help restore normal function to a deficient intestinal barrier and reduce mucosal permeability. The studies available to date suggest that these mucoprotectants can be helpful in the treatment of acute diarrhea in both adults and children. As well as improving stool parameters, they have beneficial effects on other symptoms, such as abdominal pain, nausea and vomiting. Importantly, they appear to be safe even in very young children, and thus may provide an alternative to drugs such as loperamide that can be associated with serious adverse events such as lethargy and ileus in young children]

Noventure have several products (Gelsectan, Xilaplus, Tasectan Plus or Duo)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4628347/
Xyloglucan for the treatment of acute diarrhea: results of a randomized, controlled, open-label, parallel group, multicentre, national clinical trial (2015)

 

[kangaSue]

@Notjustfatigue Just saw this paper that found that having a bifidobacterium-rich fecal donor may be a positive predictor for successful FMT for IBS at least.
https://www.ncbi.nlm.nih.gov/pubmed/28628918

 

[Notjustfatigue]

@Notjustfatigue Something I've come across recently that might be worth a try first if diarrhea is an issue is a xyloglucan product. Or maybe it could even be used as an adjunct to FMT

Xyloglucan is a film-forming protein based mucoprotectant that puts a liner on the intestinal mucosal layer which is then said to improve the intestinal mucosa resistance to pathologic damage. It's only marketed in Europe by the looks of things and was previously only promoted as an anti-diarrheal product, starting out as gelatin tannate before adding xyloglucan to it and now it's being promoted as an IBS treatment.

That sounds great for the diarrea and some IBS symptoms, but, do you think it could work at any way in others like PEM, cognitive problems, extreme fatigue or other CFS sumptoms?

Hug

 

[Notjustfatigue]

@Notjustfatigue Just saw this paper that found that having a bifidobacterium-rich fecal donor may be a positive predictor for successful FMT for IBS at least.
https://www.ncbi.nlm.nih.gov/pubmed/28628918

@kangaSue if i not wrong it depends of your microbiome perfil and the ratio bifidobacterium firmicutes that you would have. Any way i would read the paper to see what interesting thing are in it (that it should be in a healthy adult about 2.1:1 firmicutes bifidobacterium ratio).

Anyway i would read thea paper for if i find something interesting in it.

Thaks for your reply,

Hug