Dr. Borody's FMT patient - Australia - How is it going?

Borody has a fairly high success rate for UC patients (70-90%). If he's fine and cured, I suspect he wouldn't be posting here. The new FMT thread started by Sharron has some data, but not sure how many were Borody's patients. I think most of the documented successes were self-administered transplants and one via colonoscopy.

Right ConquerUC. Didn't know it was 'she'. I remember she failing initial FMT (that was the only reason why I kept her in the back of my mind). Too bad it did not work for her.

I never thought FMT is 'the' solution. It is a band-Aid that needs to be supported with other therapies to let good bugs get a foothold. And the inflammation piece, either there is some stuff locally or in the system or up in the chain/systemic, but I am more believing locally as majority of our maintenance meds act locally.

That said, did you notice my thread using CD, www.healingwell.com/community/default.aspx?f=38&m=3079470 ? I tried this with a LOT of hesitation as I was in remission at the same time I wanted to strike out bad gut flora theory for my migraine. So to connect the dots, should there be a lot of bad flora that is causing inflammation and that inflammation, plus a lot of bad flora overpowering localization of gut flora, is a distant possibility. I have been avoiding medications like flagyl for exactly the same reason since my diagnosis, as they will kill some susceptible bugs, plus good bugs and will leave resistant bugs. These resistant bugs will worsen the situation.
Makes sense?

How are you doing BTW? If I remember correctly, you are refractory to Pred. Did you post any update recently? I am away from the board as sifting through literature and boards to address DS' issues takes my all time.

Go through Hurst's latest post in Sharron's thread. No signs or symptoms of UC for 3 years now. He has not had a documented failure for the people who followed his method thus far. Yes, it takes a bit of work, diet modifications and other tools like wellbutrin, mesalamines, pred, anti-tnfs whatever, but it is well worth it in the end. Borody also does not just "do FMT" and then says you are cured. He uses his own protocols with antibiotics, which I don't happen to agree with, but it gets the job done, albeit thoroughly.

The whole is always greater than the sum of its parts. This does not, I repeat, does not cause UC to reoccur. The same applies to Michael Briggs and all the other cats who followed his protocol. No documented reoccurence yet.

Yes. I will continue to use the four letter word "cure". I don't like the ignorance here for the people who comment on things they haven't even researched thoroughly. The same applies to the LDN thread.

Post Edited (Guardian7) : 5/15/2014 7:32:57 AM (GMT-6)

Look, guy.

For those with active colitis, the inflammation has to be controlled using any means necessary and as detailed by Hurst and Briggs, this means using all the tools available - LDN, wellbutrin, prednisone, diet mods, etc, etc before, during and after the FMT

For those who cured themselves via FMT - if they are eating whatever they want, not taking any medications and living like it never existed, then it's gone. This is verified further by the scopes showing no trace colitis despite stress, poor diets and whatever else they exposed themselves to. That's not remission in the slightest means. That is a cure. Yes, I used the four letter word again. And yes, I am sure they threw the medications away as well, though you have to ask Michael if he did that in Sharron's thread.

I think if it doesn't come back in 34 months and counting then yeah, it's probably safe to bet it won't come back anytime soon.

Of course if you continue to eat trash your body will reward you with other health problems, but that's non-sequitur and we're just talking about curing UC here.

He does have good number of patents on his name, so if he is not publishing, I suspect he is going to make a boatload of money with the patents. I would not be surprised. I was talking to someone the other day, who got an invitation by a mega pharma for their luncheon in NYC. The mega pharma is focusing on poop pill, wondering who is giving the material.

Guardian7 said...
Go through Hurst's latest post in Sharron's thread. No signs or symptoms of UC for 3 years now. He has not had a documented failure for the people who followed his method thus far. Yes, it takes a bit of work, diet modifications and other tools like wellbutrin, mesalamines, pred, anti-tnfs whatever, but it is well worth it in the end. Borody also does not just "do FMT" and then says you are cured. He uses his own protocols with antibiotics, which I don't happen to agree with, but it gets the job done, albeit thoroughly.

The whole is always greater than the sum of its parts. This does not, I repeat, does not cause UC to reoccur. The same applies to Michael Briggs and all the other cats who followed his protocol. No documented reoccurence yet.

Yes. I will continue to use the four letter word "cure". I don't like the ignorance here for the people who comment on things they haven't even researched thoroughly. The same applies to the LDN thread.

I couldn't have said it better. I can say I understand having doubts or skepticism, because I felt that way myself even after I came to the conclusion that this had a very strong chance of working. I have seen others take sometimes months or even up to a year building up their courage to act after knowing about this before finally taking the plunge.

garylousiville - "what's the point of recommending anything else?" I agree I don't bother with any of those things anymore and don't understand why anyone would rather do that than just knock out the darn disease once and for all. And to think at one point I spent $700 a month on VSL #3.

deltaforce - As for FMT being a band aid, a band aid of course is short term tool to help your body get to the point where it can heal. I think an apt analogy for FMT would be like re setting a fractured bone and then using splints or a cast to hold it in place while the bone heals up until it is as good as new. In this case drugs and nutrition are like a cast to help get to the point where the bacterial balance is largely set and the intestinal wall is healed past a certain threshold.

ConquerUC - Perhaps we should ask what does it mean to cure a disease? Does it mean having no signs or symptoms for an extended period of time? How do can we even know if something is a result of the illness, a cause of it, or even a bit of both? It's hard to say. Its even hard to say to what extent everyone is even suffering from the same illness, certainly even most prescription drugs don't work for everyone. As I learned at the Human Microbiome Conference last year in Bethesda the problem is not with the mere presence of certain bacteria but more likely the absence of certain bacteria and the absence of a certain balance of bacteria in people who have some degree of problems with their immune system, psychological stress and / or genetics.

- - -
I can say that having talked to dozens of others who have successfully done this, that most of the people doing this have severe cases where everything else has failed. For those people FMT alone is most likely not going to be enough, for a few more moderate cases where people had gotten the symptoms mostly under control with diet, it has been enough and sometimes in only a week or so. I think for most people to take action and do this it has to have gotten to the point where they are willing to do whatever it takes to knock out UC and be better. And even then it sometimes still takes some weeks or months to build up the courage and fight through all of the roadblocks to get there.

I think part of what makes this so hard - to try something like this where even if it were to fail you are not likely to be any worse off - is that people have accepted as truth what the doctors have drilled into our heads, (or least mine.) That I was essentially a victim of an incurable illness where the best I could hope for was to take my chances with various drugs and hopefully suffer less and hopefully have periods of remission for which I would then be dependent upon taking drugs for the rest of my life to sustain. All of this while having the specter of the illness returning, and the inevitable prospect of surgery returning.

It was really discouraging and wore me down psychologically and I suffered from depression too. However mustering up the courage to act in spite of doubts and fears, take the plunge and then persisting was not always easy. However now that I have gotten there and have seen so many others also get there and be free from the shackles of the illness, I can say that I wholeheartedly encourage anyone to give it their very best shot - combined with drugs and nutrition if for no other reason than just to rule it out as an option. All you have to lose is the being stuck with this illness or losing your colon.

Again, if his UC pathology was confirmed through the scope and then subsequently unconfirmed after the FMT, how can people deny that it he was cured?

Because we understand the difference between cure and remission, that's how we can deny it.

Indoctrinating people with false hope (or, rather, trying to because I don't think you're succeeding with this board) is ultimately more cruel and hopeless than telling them the truth: they have an incurable disease.

Never understood why that was meant to be so earth-shattering anyway. Most people live perfectly normal lives with IBD; if you want truth, that's the truth, but it's probably not nearly as much fun as being all doom 'n' gloom and having a Serious Disease. It's not only the internet which is serious business.

Although colonoscopies can ascertain whether colonic mucusa are inflamed or not, they can't determine the absence or presence of missing bacteria, which may indeed be causing the aforementioned inflammation. Stool analysis via gut projects, as sophisticated as they are, are still in the infancy stages, but growing.

Searching for 'missing bacteria' is not how IBD is diagnosed. This tells us nothing about the presence of IBD.

Post Edited (NiceCupOfTea) : 5/15/2014 5:17:12 PM (GMT-6)

If a dude does FMT and his condition is reversed to the state where there is NO UC, no trace of UC in biopsies or the scope and no symptoms *** does it matter if it's called cure or remission.

Because we don't even know if it was UC in the first place, let alone if it was cured or not.

The point is, the person is healthy, no diet mods, no meds and no disease for x number of time.

You need to re-read Guardian's earlier posts. You do have to follow a strict diet and take meds to maintain this "cure" apparently.

If you generalise, then the results of FT for UC are mediocre at best. It is categorically not a cure, anymore than Remicade is a cure.

Edit: You added a bit to your post. I couldn't really give a carrot what an individual thinks; if they want to believe they are cured, good for them. They may even have really been cured - but not of UC.

Post Edited (NiceCupOfTea) : 5/15/2014 5:32:04 PM (GMT-6)

OOOOOOOOOOOkkkkk .....I'm done with this discussion/topic. Pretty much useless. The point is missed completely.


Just to refresh my point. If x person gets diagnosed with UC via biopsies etc, then does X thing to treat it which causes the disease to either go away indeterminately or forever, then I would call that a cure or long term remission. But whatever someone wishes to call it, in the end it doesn't matter. No more disease present forever, or for the time being is an awesome thing.

If I had FT done? Yes, I was on the same trial with Mackster at McMaster/St. Joseph University in Toronto.

Didn't really work for me, but the trial was kinda weak. It was 6 infusions, 1 per week. I think it's better to do it daily for a month or so.

and I do not see a difference between cure and indeterminate remission, no lol.

Hypothetically, if a remission lasts 60 years, it's just as good as a cure :)

As NCOT already has said, I don't believe FMT is any more of a cure than the 5ASA's, prednisone, Remicade, AZA, et al. Works in some, not in others.