Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group misinformation

Dear Doug, you've got a great soul, a great wife too, and a great sense of humor. Here's best wishes on that incision

Edited by Evelyn on 05/10/02 12:55 PM (server time).

I have a question as all of this is very new to me.
If "Ankylosing Spondylitis is caused by Klebsiella" does the NSD or whatever treatments get rid of the klebsiella? and if they do... then is AS cured when it is gone? (which to me would be the case if it is truely caused by the klebsiella)
Like I said I am new to all of this, and just trying to understand it all.
.. I am not sure if I am even making sense here but to summarize what I am wondering..... What is klebsiella?.... how does one get it?..... can it be eliminated totally?.... And if it can, then why isn't this a cure for AS?

I would really appreciate anyones views on this.

Have a great day

Pam

"Just like moons and like suns, with the certainty of tides. Just like hopes springing high, Still I'll rise." Maya Angelou

[disclaimer] Not everyone believes this information, but have they successfully treated themselves or anyone else? Ebringer, in 20 years of service, successfully treated over 600 patients--many no longer suffer from AS at all and they have avoided the skeletal damage and other 'sequelae'. I submit this as just one possible explanation--there might be others.


Dear Pam:

Klebsiella pneumoniae (Kp) is one of the most common (just behind E. coli) enterobacteriaceae: Just about everybody has it breeding in the narrow ecological niche of their intestines. It has the propensity to bloom (quickly procreate out of control) in the presence of starches and especially those starches that are disseminated as in the refined flours that reduce into massive colloidal surfaces within the alimentary tract.

The problem is not the Kp, but rather how persons with AS react to the antibody we produce against it (the most common immunoglobulin--an IgA made unique in that it is specific to Kp). Lowering the numbers of this pathogen by both diet and antibiotics has decreased and sometimes eliminated AS. It is no more a cure than there would be a cure for food poisoning--it is a matter of staying away from the bad foods and employing other methods still to keep the Kp colonies down.

We cannot totally eliminate this pathogen (safely), but we can reduce their numbers so that they are not swept into our "...Crohn's-like microlesions" that we each surely have if we suffer with AS. As far as I'm concerned, LGS (leaky gut syndrome) plays a major role in AS.

Although I daily deal with the damage caused by my once very severe AS, I no longer have an active condition--I am an EX-sufferer and I do have a commitment to try and encourage fellow ASers to also become ex-sufferers and avoid the damage I now 'enjoy.' The problem has been that NSAIDs, for example (this concept can be extended to most other drugs used in AS treatment), can make us feel better for some time--all the while compromising (via LGS) our tract and advancing the damage that we have become unaware of due to pain reduction. Higher doses and stronger NSAIDs are required until the damage cannot be so easily reversed or even a fatal complication arises. I have objections to every drug that treats the symptoms and not the root cause.

There is some information contained in Ebringer's London AS Diet, the AS Dietary Primer, and several technical papers now available in the Medical Center section of this site.

Best Regards,
John

There are reports in the medical literature that support this theory, but there are also reports in the medical literature that refute this theory. This theory remains controversial in the medical literature. The best way to see this material is to look in medline. There are over 200 articles that come up on Medline doing a search for "Klebsiella AND ankylosing spondylitis"

Here's a link to the long post that I've put further down this thread on this subject, dealing with several articles that do not support this theory.
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=53351&page=0&view=expanded&sb=5&o=365&vc=1#Post53351

Thanks for the information John,
Now I have another question.. What exactly is LGS? It sounds yucky lol, But what is it?

Have a great day

Pam

"Just like moons and like suns, with the certainty of tides. Just like hopes springing high, Still I'll rise." Maya Angelou

Evelyn,
Thank you so much for all the research you do in locating these sites for us all to check out. I went and looked at each one..and although I would probably need a medical dictionary to understand most of the terminology there, what I am finding is that there are so many studies on these "theories"
And I guess in my opinion it comes back to what I am finding (and have found since coming to this site)... that what works for one person with this disease may not work for another.
And is it just me or does anyone else kind of feel like a guinea pig with the treatments for this disease?
Thankyou again for your response and your help.

Have a great day

Pam


"Just like moons and like suns, with the certainty of tides. Just like hopes springing high, Still I'll rise." Maya Angelou

I'm happy to agree with the statement you made: "there are so many studies on these 'theories' " ! I believe it is best to be exposed to the complexity of this literature, in order to make well-informed choices. Good luck on finding a suitable course of action to handle your AS -be it traditional, diet, antibiotic, or other alternative!

Edited by Evelyn on 05/10/02 02:59 PM (server time).

Edited by Evelyn on 05/10/02 03:01 PM (server time).

Dear Evelyn:

You should not be surprised that if you submit a reference that is contrary, it will be held up to a reasonable level of scrutiny. I stand by my own opinions and need no instruction about how to express them. None of these papers are sacrosanct (including those from Ebringer) and I am willing to think critically about any of them.

Both you and Ebringer work in the field and must be polite; I do not have the same restriction and I have no fear of any censorship within certain genteel bounds. All hypotheses should be challenged and if they can be defeated or supported based upon evaluation techniques or obvious results, it does not take any specialized experience or knowledge to form a useful opinion.

Although I do not and have not worked in the medical industry, I have written and reviewed many technical papers for publication and understand well enough the scientific rigor that should be employed.

Whether I have every arcane detail correct, I more respect actual results than all the debate over epiphenomena and unverifiable claims.

And I respect all the members of this site who are certainly well enough able to tell the difference between my own opinions and fact. If I provoke more study and research, for whatever the goal, I do not consider this a bad thing.

Perhaps I need a [disclaimer] before sharing the experiences that have helped me...

using perjorative language does not constitute scrutiny.