Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Our `Friends` the Klebs Might Have Been Nailed

Sue Posted Link - http://thepowerofpoop.com/why-fmt-doesnt-always-work/

Sue - excellent link. Spent most of the morning checking further links and the videos - see the side bar. And still got a ways to go ! Covers many of the questions I had been formulating to put to my new gastro (the Prof, big teaching hospital here in France with a specialist gastro dept. I have a 7 hour journey to get there !)

At this time we don`t know IF this will be a route for me, apart from the diagnostic protocols to undergo first (have started them), there are the further pre-FMT protocols to be addressed. All a bit Daunting. But fascinating.

Thanks for putting it up - good one.

Hi Drizzit - Yes, those stem cell therapies, too much fraud around. We have been looking at it in the glaucoma group...Ho-Hum. Scary what is going on. Sadly desperate people are only too ready to take desp measures and all too often end up being hoodwinked !

So far, stem cells have not performed overly brightly !

As for the FMT - clinical trials world-wide have been going on for a couple of years, and now there are many more underway and more in the pipe-line (recruiting). See the link on Sue`s link, under Resources. Very interesting.

Think it could well be a way forward for many but not for everyone, and, as has been discovered (seen) not everyone is a good responder to FMT protocol. There are NO promises. Still in the trial and error stage, and, as has been pointed out, post marketing will answer many questions. Generally reckoned 7 years, but as has been proven with CT scans, contrast dyes, cortisone, fluoroquinolones, NSAIDs etc etc giving rise to iatrogenic diseases / conditions, could well be a greater number than 7... Sigh !

Just idly following a few links - happened on this -
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3819561/
Published online 2013 Nov 7. doi: 10.3748/wjg.v19.i41.7213
PMCID: PMC3819561
Fecal microbiota transplantation for severe enterocolonic fistulizing Crohn’s disease

Very successful - patient still being followed up. But, fascinating, this FMT aint new at all ... Oh no. "The concept of fecal microbiota transplantation (FMT) has been used in traditional Chinese medicine at least since the 4th century." Nothing new under the sun ! But, when one pauses to think, many puppies will eat horse poop. In fact, would suggest that most pups in a horse environment will eat horse poop - they need the `whatever` is in horse poop for gut health.

Onwards - digging some more - digger Molls, Keeping on, Keeping on <VBG>

ValsMum - nice to see you. Strewth, you did go through the wars. Agree, the ghastly hospital infection could well have triggered the RA. Has often been said that food poisoning may be `a` causal factor in triggering AS - not proven. For myself, had several horrific food poisonings, shudder. Then turfed up with this blasted condition and some far too many comorbidities. Sigh.

ANY time one is on antibacterials, must take probiotics. The anti-Bs kill off the good gut bacteria - dead ! Here in Europe most doctors being very aware of this prescribe probiotics as a matter of course when prescribing the anti-Bs.

Have you tried the various fermented cultures that are advocated ? One can make ones` own from veggies in one of those huge porcelain containers - had one, but gave it away...DUH ! Or perhaps try a little organic vinegar with the `mother` and some lemon juice, added to raw or lightly cooked veggies ? Betty Rawkar here on KA is the knowledgeable one on this subject. Find her in the recipes forum. She is a whiz and, has just brought out a recipe book...

Me ? Thanks hon. Staggerin on. Get this darn gut under control and try to save my eyesight and the rest can go take a jump... Back pain, inflammation, knees giving out with osteo and inflammation, but, can ignore, except when my spine or neck really gives the bleep bleep... Stagger on. Most irritating is carting a suitcase or loading / unloading shopping as the costo raises its ugly head and one can hardly breath for a few days. Now, that is a bind. Heigh-Ho for the life of a grumpy ole woman <LOL>

Take care dear - nice hearing from you. Glad you are enjoying the thread. (((HUGS)))

I have absolutely no desire to deal with you again, but as I said previously, if you spout off blatant inaccuracies, I am likely to counter them. No one on the stem cell thread, said "it's not a clinical trail and therefore doesn't count as evidence." You expressed opinions on both the stem cell thread and the HGH thread and called them "FACT". Several people (including me) asked you for links to sources to back up your opinions. You variously told people to google it or provided links to a personal blog, some websites and some trials. The problem was that the trials you provided did not say what you claimed they said. Not a single link you posted provided any support for your contention that stem cell therapy was a proven treatment. Not a single link that you posted provided any reason to conclude that stem cell therapy was safe and effective for people with Ankylosing Spondylitis. I had read many of those same studies previously (for work) and I knew that you were either misunderstanding them or deliberately misrepresenting them. I pointed out out many of the inaccuracies and stated that those trials were not proof of your opinions. I never claimed that only clinical trials were adequate proof. As far as I can see, no one else did either.

On this thread, a long time forum member, who is well know and respected for her propensity to research everything, provided a link to an article that she believed would be of interest to many. (And she was correct - a number of people are interested.) She did not present this as proof, a clinical trial, or even as definitive. She certainly did not belittle other people who were not rushing out to purchase plane tickets to whatever third world country they thought they could get this treatment in. As you have on other topics, you are now misrepresenting what other posters have said.

Please stop trying to make this board all about louisay and louisay's opinions. This is a support forum for everyone with Ankylosing Spondylitis and related Spondyloarthropathies. It is generally a pretty congenial, welcoming group. Many people have tried to nicely explain where you are going off course. Others, like me, have become increasingly frustrated by your misrepresentations and declarative statements without backing. Your rude and occasionally profane responses are not appropriate. You were previously told by admin that you needed to move on from the stem cell topic. Bringing it back up on other completely unrelated threads is inappropriate and, quite frankly, becoming hopelessly boring. It is time to let people discuss other topics that interest them.

I will now be making use of the "ignore" feature available on the board.

There is as yet NO cure for AS. ALL that can be done is to *manage* the condition. Suggest you do your own searches commencing with the many links and excellent information that has been posted here on KA by those who *suffer from AS - many of whom are researches in their own right, are in medicine and are professional people. Read these patient stories - they come under various clear-cut headings -
http://thepowerofpoop.com/fecal-transplant-success-stories/

But as you are so openly and blatantly obnoxious, disatisified with the group and continually express rudeness to the members, are argumentative to no good end result, are unable to present any good form of arguement with calmness and good grace, I strongly suggest that you go elsewhere or, keep quiet and *learn. Meanwhile, an apology to all is very much in order.

Meantime, I leave you with enough good links to keep you busy for a year - probably get brain ache, but you might learn summat if you can but use those little grey cells... <smile>

Louis Quote - "meantime go create your own internet forum if you want to suggest people to go elsewhere."

One does not `want` to but your totally rude, obnoxious and juvenile attitude to all and sundry and in every thread that you enter, makes it the obvious answer for you to go make *your own group*. Suggest young man that you follow your own advice.

louisay, I sent you a Private Message. Please read it.

Molly, let us know if you do this. I am very very interested. When I saw they had clinical trials with essentially "probiotics on steroids" (FMT as purified pills), I was very excited. Still am. But too am curious about those cautions on that page.

But I'm very much a "sometimes you just gotta go for it" type of person if it seems safe, which this does.

If one does nothing, nothing happens. If one tries, then it may be a 50:50 chance, but better than not going for it, IMHO.