I may have discovered a new UC treatment... Please read.

Andrina said...
Special carbohydrate diet. It's designed to starve out the bad bacteria and it includes the 24 h fermented yogurt to replace it with good bacteria.

Ok. Yeah, I tried something similar back around 2007, and I just couldnt survive on yogurt alone - I was an 8000 calorie a day eater back then due to youth and activity level...

Hi Bruce,

"quorum sensing mechanism" is very interesting idea. I have never heard of it before.
When I read your post for the first time I did not understand it properly.
So hypothesis that broken "quorum sensing mechanism" can be a cause of UC is valid in my point of view.

In my understanding:

broken "quorum sensing mechanism" cause overpopulation of certain bacteria(s) and this is followed by reaction of our immune system.
But the problem can not be solved by using antibiotics and/or probiotics in long term. This should bring only temporal relief. The solution is repairing broken "quorum sensing mechanism".

Please could you provide more info about the 'bacterial quorum sensing disruptor' .

Thank you

Tufas said...
I will chime in to say I have also had a positive experience to antibiotics right before I was first diagnosed. I had just had a course of antibiotics for an infection on my foot and my symptoms just disappeared, very suddenly. I was pretty happy about that but had a colonoscopy scheduled for about a week later due to all the trouble I had been having, and that did see signs of mild inflammation / UC so I was prescribed mesalazine. I reacted horribly to that, started flaring significantly and immediately upon taking it, and have reacted badly to every medication since except prednisone, basically been in a non-stop flare ever since.

I don't think the disease is necessarily a gut dysbiosis, or at least, not entirely so. I am partial to the theory of increased gut permeability and a genetic susceptibility to over-react to bacteria getting through. The Briggs Protocol document goes into a lot of detail there, backed up with a lot of literature, on how this could happen and in particular the role TNF-a plays it in all. Unfortunately, Remicade (strong TNF-a inhibitor) was my worst reaction yet, nearly killed me, so that is off the table for me, and I haven't been able to get a hole of Welbutrin that Briggs recommends...

IF Briggs was correct and it is related to gut permeability and an overreaction to bacteria getting through, that can still explain why antibiotics can have a positive, and also a negative, effect. By killing off bacteria you are helping reduce what gets through, and also potentially helping clean up any that did get through, which can help your immune system can calm it down. This may reduce flare symptoms considerably. However... the gut bacteria are super important for the upkeep of your gut lining. If antibiotics kill them all off then the gut lining is going to be less able to get energy and look after itself, and that may actually increase gut permeability. I think this can explain why antibiotics can be both associated with the initial cause of the disease, and why they can appear to help, but only temporarily. Probiotics straight after may well help somewhat, and depending on the strains maybe our bodies don't overreact to those as much, but unless the gut wall lining is fully repaired (and I presume that takes a long time?) then the symptoms would return for most of us.

In short, Antibiotics did appear to work well for me once. They haven't worked for me since then but I don't discount the idea, I think it makes sense given at least a few different hypotheses on how the disease may work, but that most of us probably need more than just a gut bacteria reset. It is definitely food for thought.

I had not heard of the Briggs Protocol before. I have since found the paper and have been reading it. Makes a lot of sense to me, and I'm not entirely sure it's in contradiction to my bacterial theory in that I don't claim to have any idea what the body's chain of reactions to said virulent/irritative bacteria is - though his paper provides a pretty good background on this 'cascade' of reactions. I need to get all the way through it, but these two hypotheses may be cooperative...

Oligodar said...
OK Bruce,

so why there is not explosion of virulent/irritative bacteria in normal healthy intestines?

1. There must be another cause (for example broken "quorum sensing mechanism")
2. There must be another mechanism that can regulate overpopulation.

Well, there very well may be explosions of various virulent/irritable bacteria in normal (aka, non-UC) people's intestines. But, those individuals just don't have such a bad reaction to it. They may just get diahhreah, or whatever other irritated system. Their immune system may just knock it down to size and back to normal. Also, it very well could be (likely the case) that different folks react differently to different bacteria, so what makes you flare, may have zero effect on me - due to general genetic differences, etc.

Also, maybe the virulent/irritate the bacteria is in fact irritating to everyone. So, if you are unlucky enough to get that particular strain in there, well, you get UC. Has anyone tried FMT from a UC sufferer to a non-UC/healthy recipient? To see if UC were induced? Maybe in animal trials?

In any case, you can imagine, if you were to get a bacteria in your gut, that you don't want there (and it likes being there), that it'd be nearly impossible to get rid of it completely...

I did a series of FMTs last year under a medical research study. It caused an abscess that needed emergency surgery, followed by a flare that nearly killed me. I now have a very small but permanent fistula because of what happened. I have read a lot about FMTs and it's not true that they universally fix UC. Actually more than half are not brought into remission by it. So... the theory is wrong from the start.

I think people with UC suffer from flora diversity problems in the first place, maybe from childhood. They were fed crappy diets, had stressful lives, or some other factor. Most UC patients develop the disease by their late 20's, the time when natural metabolic function is beginning to decline. It's around this time that most diseases begin manifesting in people, in early onset.

With UC, it's manifesting because they have had a lifetime of digestive neglect or environmental harm that they probably didn't know about.

For me, antibiotics (without probiotics) followed by several years of high stress demanding work, my marriage ending, and (in hindsight) a nutrient poor diet were all factors. I'm in remission now but my gut will never be the same. I am not a normal person by any stretch.

I do think gut flora are key to the cure for UC, but it's going to be incredibly complicated. It's just as complicated as studying the human brain because it's not enough to study the number of species, but we also have to know how they are intercommunicating... and that is as complicated as studying the world's ecosystems. And each person is unique. Modern medicine is incapable of dealing with this because they create the same treatments for everybody. Also they still stubbornly pursue the immune suppression treatment model. So I am not hopeful.

I think dysbiosis causing immune dysregulation is the root reason for UC. In many cases there is probably a pathogen happening on top of it. Dr. Borody in Australia believes fusobacteria are the main instigator in UC, but he is still doing research. In Crohn's, the MAP theory is gaining ground, and a vaccine is already being trailed. One thing the MAP studies have shown is that Crohn's patients have immune systems which lack the necessary T cell function to defeat this mycobacterium, which is why it turns infectious in them and not others.

No doubt, there is a genetic component to this. However, genetics may not be as important as people are assuming. China had almost no IBD until the 1980's. They were a closed economic system. Then by the 1990's, their first cases started. Since 2000, their numbers as just as bad as ours. So clearly there are human-caused factors that create this disease, which can spread from place to place: industrial agriculture, the improper western diet, hardcore modern stress and survival life, antibiotics, etc. Something is doing it that wasn't there before.

I'm not saying UC is only a modern disease but the levels we're seeing it at are ridiculous compared to before. And still, modern medicine acts like they don't know.

iPoop said...
Why some get it and others do not just screams genetic-susceptibility/predisposition to me.

Can't disagree with you there at all. I just think that the genetic predisposition is that of sensitivity to particular strains (or singular strain) of gut bacteria (or, the bacteria's by-products, as they all have). I think, as MarkWithIBD described, the rise of UC along with the prevalence of western lifestyles, is evidence enough that it isn't a simple genetic defect. It is clearly related to diet, environment, food or water systems, etc. And, with these new environmental substances, I have to assume that this can lead to us getting bacteria in our gut that we otherwise would not have (ie, Roundup - which is a strong antibiotic, and is in most all of our food these days) - and that some of us are genetically (by inheritance or epigenetic) disposed to have an intolerance to these otherwise foreign bacteria.

iPoop said...
My 2-cents is that a weird bacterium makeup is more a symptom then a cause.

I do not believe that one can be treated with a symptom, and end up in symptomatic remission... As said above, the fact that FMT (and what I've done, or other gut flora replacement schemes) is effective to any statistically significant degree provides significant evidence that bacterium makeup is a primary contributor (not symptom) to UC.

i wonder if anyone here was taking xifaxan (reifaximinum)? some people on the Polish forum had very good experiences with it. I've never taken it.

"my suggested 'Strong Full Spectrum Antibiotic followed by Probiotics' could/would do the same thing (gut flora replacement/reset) but in a much more predictable and safe manner than with FMT. "

There's been some here who tried the triple antibiotic thing, followed by FMT and other treatments (sounds good on paper to wipe everything out, and start with only goodies) and they were one hell of a mess afterwards. Worse off then before treatment. It did not produce the expected results. Sounds good on paper but reality might be a bit different. We just understand too little about what's good and what's bad, how, and why. Lots of opportunistic bacterium that breed like wildfire when given an opening.

Lots of interesting ideas in this thread though!

There is quite a few old threads about members in the crohns forum that was prescribed Xifanax. Some got relief with the diarrhea, bloating & gut pain. It's often rx'd for people with IBS. The downside to it, extremely expensive & some insurance companies will not cover the cost.

Looks like one person tried his protocol and wrote an article that was picked up by CNN. He claims bupropion was effective in 100% of people who contacted him about it with an 80% remission rate. Sorry I just don't buy it. I won't derail the discussion any more I just think it's nuts to follow a random persons internet theory without any knowledge of the safety of it.

To be concise, all I'm doing here is sharing my experience of finding an effective treatment for me, and throwing it out there for two reasons:

1) To see if it helps anyone else. If so, then maybe we're on to something. If not, then well, no harm no foul.

2) To have a dialogue with folks that agree or disagree with my premise of WHY this may have worked for me - so that maybe we can get a bit closer to an effective and safe treatment and/or cure for UC.

And, the fact that my UC is EXTREMELY aggressive if/when it comes out of remission - and the difficulty in keeping it in remission (except by smoking, for whatever reason), I am amazed that this worked and has continued to work, as well as it has.

So, please, if you are of the mind to do so, please try what I did, and let me/us know how it went. If I can get a few more data points, I'll put more time and effort into this.

brucen36 said...

I would try it but can't get any of the products you suggested in Canada, i.e. Z-Pac, LiveLeaf, the specific probiotic you mentioned.

LiveLeaf can be gotten via amazon. It's not a prescribed thing, so anyone should be able to get that...

Question is then, are you in a full flare or some level of symptomatic remission? I'm not sure the LiveLeaf will do much if in a full flare (as I assume it's too late, as the virulent bacteria have already taken over the house), but it's cheap enough and benign enough otherwise, that it's worth a shot I suppose.

Anyone who is in a symptomatic remission of some degree (light bleeding, mucous, just one or two BM/day, etc), I encourage you to try the stuff and see if it knocks it out completely. I view it as a preventative or maintenance device, not a flare killer (that's what the Z-Pac & probiotics are for, IMO).

Bruce J said...

Uniform Charlie said...
I won't derail the discussion any more I just think it's nuts to follow a random persons internet theory without any knowledge of the safety of it.

Hey, listen, to each their own. I didn't get all the way through that protocol of his, but it really isnt relevant in this case. As for following others theories, etc without safety knowledge -as best as I can tell, whatever Briggs put forth as treatment was totally benign. And, in the case of what I'm hypothesizing here, there isn't anything unsafe about antibiotics, probiotics or the liveleaf stuff. But, if that kinda thing makes you nervous, then so be it. But when it comes to UC (and a myriad of other diseases) it's patently clear to me that the medical/pharm establishment really hasn't got even the slightest clue what causes it. And, I am not fooled by white lab coats to believe that there is some magical authority there - there isn't. I have been far more successful in managing my own disease than blindly following the direction and/or advice of the various GI docs I've had to interact with. They are after all highly limited on what they can say, do, prescribe, etc - so as to avoid the potential for lawsuits and/or loss of their licenses.And, given that it takes $1B+ and 10+yrs to get a new drug on the market, I believe that those that wish to try new things should be encouraged to do so. After all, this disease is so devastating to quality of life at times, what else have we got to lose?

And, really, I wouldn't be surprised one bit if UC turned out to be effectively treatable with something as simple as a Z-Pac and probiotics. For, if that is/were the case, then the pharm industry really would have zero incentive to provide anything but more meds to treat symptoms. It's not as if such a strategy is in any way monetizable so far as I can tell (for, if it were, I'd surely try, lol).

I wasn't trying to criticize what you are recommending here. Have you read the Israeli study where they compared the microbiomes of people who took antibiotics followed by probiotics and found that the probiotic delayed the body's ability to return to "normal"? I wonder if, in your case, "normal" is all screwed up, which is why you get the benefit.

Can you detail the timing of your experiment? How many times have you tested it etc?