DIY Fecal Transplant...would you try it?

[ljimbo423]

I'd like to see the Borody study replicated. He seemed to achieve a 41% long term ME/CFS cure rate (since 70% x 7/12 = 41%) with fecal transplant.

Thanks for all those references, great resources! I would also like to see that study repeated. He was only able to contact 12 people for the follow up, that's where the 58% sustained response comes from. So the others could not be included in the follow up.

Contact was
achieved with 12 patients after 15-20
year follow-up.

Conclusion: Bacteriotherapy achieves initial
success rate of 70% in CFS and a 58%
sustained response. Given that manipulation
of the colonic microbiota improved CFS
symptoms, bacteriotherapy for CFS warrants
further investigation and may provide
further insight into a possible etiology of CFS

link

 

[Hip]

Thanks for all those references, great resources! I would also like to see that study repeated. He was only able to contact 12 people for the follow up, that's where the 58% sustained response comes from. So the others could not be included in the follow up.

Yes, 70% of treated ME/CFS patients went into remission after bacteriotherapy; out of this 70% gaining remission, 58% of them were found to still be in remission when some of them were contacted 15 to 20 years later.

So that means bacteriotherapy is able to place 58% of 70% = 41% of patients into long term remission, according to Borody's study.

But note that the Borody study implanted cultured gut bacteria (Bacteroidetes, Clostridia, and E. coli) into the colon, rather than a fecal microbiota transplant. So that's not quite the same as FMT.

However, at Borody's own clinic, the Centre for Digestive Diseases in Australia, he does not appear offer bacteriotherapy or FMT treatment for ME/CFS. According to the website, he treats ulcerative colitis and IBS with FMT, but not ME/CFS. So his study claims to have found an amazing cure for ME/CFS with IBS, but he is not offering this treatment at his clinic.

 

[ljimbo423]

Yes, 70% of treated ME/CFS patients went into remission after fecal transplant; out of this 70% gaining remission, 58% of them were found to still be in remission when contacted 15 to 20 years later.

So that means fecal transplant is able to place 58% of 70% = 41% of patients into long term remission, according to Borody's study.

Gottcha! Math never was my favorite subject.

Still can't help but wonder how much higher that could be if the 5 that relapsed out of the 12 were adhering to a really healthy (post cfs?) lifestyle.

So we count EVERYBODY in the study.

 

[Hip]

Yes, it's possible that say consuming high doses of prebiotics after your fecal transplant (which I understand are generally better that probiotics at keeping the bad bacteria in check), that might help prevent relapse, or at least might help maintain remission for longer.


But in any case, even if you relapsed after only 1.5 to 3 years, as many of the patients Borody treated did, there is no reason why you could not get another fecal transplant, and then hopefully obtain another 1.5 to 3 years of remission. If a fecal transplant achieves more or less full remission, and you could get back to work and start earning money, paying for a fresh transplant every few years might be econmically feasible.

I think the Taymount Clinic in the UK charges £4,000 for a fecal transplant, which seems expensive; but much cheaper options come from OpenBiome, who charge $635 for FMT oral capsules (though they do not sell these direct to patients; you need to work with a doctor).

Note that at Borody's own clinic, the Centre for Digestive Diseases in Australia, he does not appear offer bacteriotherapy or FMT treatment for ME/CFS. According to the website, he treats ulcerative colitis and IBS with FMT, but not ME/CFS. So his study claims to have found an amazing cure for ME/CFS with IBS, but he is not offering this treatment at his clinic.


However, if you are only going to get say 10 weeks of improvements in ME/CFS symptom (but not remission) before relapse to your prior state, as KDM found, then it may not be worth the money. But if you get 1.5 to 3 years full remission, or even permanent remission, as per the Borody study, then it certainly is good value.

Maybe it is all about finding one of these superdoners.

 

[ljimbo423]

However, if you are only going to get say 10 weeks of improvements in ME/CFS symptom (but not remission) before relapse to your prior state, as KDM found, then it may not be worth the money.

I wonder what, if anything KDM and Borody did differently. Maybe, as you said, the donors play a very big role in the success of the treatment.

 

[Alvin2]

Yes, it's possible that say consuming high doses of prebiotics after your fecal transplant (which I understand are generally better that probiotics at keeping the bad bacteria in check), that might help prevent relapse, or at least might help maintain remission for longer.


But in any case, even if you relapsed after only 1.5 to 3 years, as many of the patients Borody treated did, there is no reason why you could not get another fecal transplant, and then hopefully obtain another 1.5 to 3 years of remission. If a fecal transplant achieves more or less full remission, and you could get back to work and start earning money, paying for a fresh transplant every few years might be econmically feasible.

I think the Taymount Clinic in the UK charges £4,000 for a fecal transplant, which seems expensive; but much cheaper options come from OpenBiome, who charge $635 for FMT oral capsules (though they do not sell these direct to patients; you need to work with a doctor).


However, if you are only going to get say 10 weeks of improvements in ME/CFS symptom (but not remission) before relapse to your prior state, as KDM found, then it may not be worth the money. But if you get 1.5 to 3 years full remission, or even permanent remission, as per the Borody study, then it certainly is good value.

Maybe it is all about finding one of these superdoners.

Or we could figure out why this works (assuming it gets through a legitimate and well designed double blind placebo controlled study) and treat everyone with a higher success rate and much lower risk.
I've always disliked treatments that are not understood because when you don't know how something works you have no idea not just what risks your taking but what the future holds, relapse, side effects, toxicity, resistance, tolerance?

 

[arewenearlythereyet]

The other thing about not knowing how it works is that you may be attacking the problem from the wrong angle.

People may have an issue that affects the gut before their biome gets out of wack and so changing the biome only gives a temporary reprieve before it reverts to its new "normal" balance. If the metabolism is causing the gut biome to be altered such as from HPA dysfunction, low stomach acidity or high histamine levels then the gut biome will always revert back to what survives the new conditions.

With regards to the existing research......

Without standardised screening of sufferers to participate in a clinical trial via a recognised diagnostic test, all research in this field will have variance from study to study. The variance between existing studies could be due to difference in doners, but it could also be because the screening of participants gave a different mix of subtypes? Or it could be because the study had skewed results because it was so small.

We just know very little at the moment to draw any conclusions.

What we do know is that probiotics have been around a lot longer (20 years) than this treatment and even with initial promising studies there still isn't any research evidence to understand the complex mechanics or any proof that probiotics have a dramatic affect one way or another. This says to me that full understanding is a long way off.

 

[barbc56]

So that means fecal transplant is able to place 58% of 70% = 41% of patients into long term remission, according to Borody's study

Big Red Flag

Thomas J. Borody has a pecuniary interest
in the Centre for Digestive Diseases where fecal microbiota transplantation is a treatment option and has filed patents in this area.

This is quite unscientific, unethical as well as making money from patients who are desperate.

Professor Borody is not waiting for controlled clinical trials to treat a range of diseases

.
On claims that someone was cured of Chrones disease:

Australian Gastroenterological Society urges caution
Other doctors, however, are not convinced faecal transplantation cured Ms Heskett.
Dr Katie Ellard, president of the Australian Gastroenterological Society, says no data exists to show FMT cures anything except infections caused by the bacteria, C.difficile.

"Crohn's disease can wax and wane and people can get better for a while without intervention," she said

The bottom line.

It's inappropriate to let enthusiasm overtake caution and start doing FMT for all sorts of conditions where we don't know if it works or if there is a potential downside.

Dr Katie Ellard

http://www.abc.net.au/news/2014-03-18/sydney-doctor-claims-poo-transplants-curing-diseases/5329836

 

[Alvin2]

Big Red Flag

This is quite unscientific, unethical as well as making money from patients who are desperate.
.
On claims that someone was cured of Chrones disease:

The bottom line.


http://www.abc.net.au/news/2014-03-18/sydney-doctor-claims-poo-transplants-curing-diseases/5329836

You are quite correct.
It is certainly possible this can treat more then C Diff, but some of the outlandish claims are unlikely and mixed with possible legitimate ones. Ironically Parkinsons is possible, Alpha synuclein can travel form the gut to the brain an recently experimental evidence has come out, That said i agree with the professionals, the risk is not worth it, and more research is warranted and should be done before using this treatment.


The biggest problem right now is the people selling this as a cure all and taking stupid risks and people falling for hype, but the biggest real problem is the lack of research in this area. At this rate it will take decades to scratch the surface, when more research should be started at a rapid clip so we can scratch the surface in a few years instead.

 

[arewenearlythereyet]

Personally I think to get to the bottom of this (scuse the pun) this is as big a challenge as the human genome project was

 

[Alvin2]

Personally I think to get to the bottom of this (scuse the pun) this is as big a challenge as the human genome project was

Well then who better for the job then Ron Davis
After he has cured ME/CFS of course

 

[Hip]

In the context of fecal microbiome transplants for health, I wonder whether the natural behavioral instinct that you often find in dogs (and other animals) for eating the feces (coprophagia) of other dogs might be nature's way of providing the dog with a good intestinal microbiome?

Most dog owner websites I've looked at don't seem to have considered this possibility: that dogs may just be looking for some probiotic friendly bacteria for their guts when they eat the feces of other dogs.

However, the person writing this article suggests that it may be a healthy microbiome that the dogs are really after:

The vast majority of dogs won’t eat feces that are more than two days old, suggesting that they prefer the fresh stuff for its microbial punch, she says, especially when they’re attempting to regenerate their own gut flora.

The Wikipedia article on coprophagia says that in humans, coprophagia has been observed in individuals with mental illness. Again, one can ask: is such behavior just some meaningless aberration, or is there literally a method to this madness, in the sense that these individuals are trying to medicate themselves with nature's own microbiome medicine? Certainly the gut microbiome seems to play a role in mental health diseases: Gut Bacteria May Affect Bipolar Disorder & Schizophrenia.



Of interest: ‘Young poo’ makes aged fish live longer

Scientist Gives Himself Fecal Transplant To Try A Hunter-Gatherer's Microbiome

 

[lansbergen]

However, the person writing this article suggests that it may be a healthy microbiome that the dogs are really after:

Don't think so.

 

[Hip]

Don't think so.

What's your view then on the reason for this common behavioral response in dogs? Some suggest it is the digestive enzymes in the feces that the dogs are after.

 

[lansbergen]

What's your view then on the reason for this common behavioral response in dogs? Some suggest it is the digestive enzymes in the feces that the dogs are after.

They love the predigested food. They eat also catpoop and even cowpoop.

 

[Hip]

They love the predigested food. They eat also catpoop and even cowpoop.

There are certainly many reasons proposed for why dogs eat feces:

A dog’s digestive system is dependent on a specific mix of enzymes to break down carbohydrates, proteins and fats. There is some evidence that suggests that dog digestive systems haven’t quite caught up to modern diets that include less animal protein and far more carbohydrates and plant proteins. Some veterinary nutritionists have suggested that dogs eat stool to replenish enzymes so that they are better prepared to digest their food.

There is also evidence that dogs that aren’t getting enough of certain nutrients will resort to eating poop. A lack of vitamin B is often said to be a cause of coprophagia.

Another common theory is that overfeeding a dog can lead to coprophagia. A dog that is overfed can’t absorb all of the nutrients in his food, and thus may try to “recycle” his nutrient rich waste.

 

[arewenearlythereyet]

There's a possible alternative thread emerging...."why does my dog eat poo?" I find the link to the human gut biome a little tenuous?

Other alternative threads could also be "why does my cat eat grass?"

 

[Valentijn]

A lot of animals eat poop, because it has nutrients in it. Basically, it's food, if you're a critter which isn't squeamish.

 

[Manganus]

There are certainly many reasons proposed for why dogs eat feces:

And there is certainly a lot we do not understand about the cooperation between animals and our intestinal bacteria (or bacteria on the skin and on mucous membranes).

 

[MaximilianKohler]

I'm new to these forums and found this thread via search based on someone's suggestion. Some great info in this thread! Thanks to the contributors!

I would try it, and have tried it, and am convinced that if I can find a good enough donor it will cure me completely. I agree 100% with the person who posted the sources on "super donors". Donor quality is #1 importance.

I've been following this area of research very closely for the past ~3 years via microbiomedigest.com. I've cataloged a bunch of info here https://www.reddit.com/r/HumanMicrobiome/wiki/index for anyone interested. Including info on safety. You can use "ctrl+f" for keywords.

Primary issue is finding a good enough donor. I've been failing to do so for the past 2 years.