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Joined: Jan 2010
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Ninja_AS_Kicker
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Ninja_AS_Kicker
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@jroc.

you are underestimating the fellow colleagues from this forum.
and you cannot battle faith with facts. they are from different realms.
but sometimes faith is more important than facts. faith is the thing that keeps us going.

tell me, is the goal that matters or the means to achieve it?


34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile
Joined: Sep 2001
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Addicted_to_AS_Kickin
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I find treasure in both what you argue and the ferocity of John's advocacy for perhaps all things Ebringer. Your dispute if courteous is all the more enlightening. If, however, I have my case brilliantly won before the jury and I open my closing argument by inferring of calling opposing counsel a fool or? a hertic then just as assuredly I have lost my victory. Jurors will kill such such a messenger

Last edited by stevec; 04/13/12 01:28 AM.



L-R: Julianna, Jamie, Diane and Tonimarie

stevec-they also serve who stand and wait
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Silver_AS_Kicker
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Silver_AS_Kicker
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Quote:
however when the messages don't stand up to rigorous enquiry it brings the credibility of the messenger into question.


Should this be true, most will tune the message out. The messenger will also eventually lose credibility in public forums. However, I observe this not to be the case regarding the message in question. Therefore a subset of members, maybe even a majority, have no issue with the message or the messenger.
Quote:

however many people here are not in that position and tend to trust the messenger so sometimes it is important to question the messenger, particularly when they repeatedly use an 'i just know i'm right' style of answer to important questions.


Sounds like many a medical doctor I've visited. Perhaps this is why I don't return? It also makes fear for all the members running around here that put there trust in these providers.


Kind Regards,
Jay

Almost all of us long for peace and freedom; but very few of us have much enthusiasm for the thoughts, feelings, and actions that make for peace and freedom. - Aldous Huxley

Was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls are now. - Thomas Jefferson
Joined: Oct 2008
Posts: 758
jroc Offline OP
Magical_AS_Kicker
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Magical_AS_Kicker
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Quote:
I observe this not to be the case regarding the message in question.

that may well be true but just to clarify again to ensure there are no misunderstandings. the messages that i am questioning are the mechanism of molecular mimicry involving klebsiella in AS and other diseases and why certain proponents of this hypothesis may have an unhealthy level of attachment to it. i am not questioning the message that LSD or NSD are potentially useful treatments for AS though i am questioning the mechanism by which they work.

i agree with your point that physicians should not simply regard their views as superior because they are in a position of authority. their views should also be subjected to rigorous enquiry. for example a few years back my rheumatologist provided me with a copy of the letter that he sent back to my GP which says "there is no evidence that methotrexate works for AS, we use it simply because we do not have anything else" and yet he prescribed it instead of sulfasalazine despite no evidence of efficacy, plenty of evidence of adverse side effects, and the existence of plenty of evidence for the efficacy of sulfasalazine. however we should be careful not to extrapolate the actions or motivations of a few physicians to the entire profession, just as scientists should be careful about extrapolating an unproven hypothesis from one disease to other diseases. the majority of doctors that i have seen have been extremely competent and helpful given the guidelines that they must adhere to and treatments that are available to them.

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Journeyman_AS_Kicker
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Im not a person of Faith and Im still going. I do have faith like my son wont steal, or my wife wont cheat on me; I have no faith of mysticism and supernatural.

"tell me, is the goal that matters or the means to achieve it?"
Circular argument there.

There is a reason that Scientific proofs are not on a slippery slope and that some Scientific theories are.

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First_Degree_AS_Kicker
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Originally Posted By: jroc

that may well be true but just to clarify again to ensure there are no misunderstandings. the messages that i am questioning are the mechanism of molecular mimicry involving klebsiella in AS and other diseases and why certain proponents of this hypothesis may have an unhealthy level of attachment to it.


Since you are questioning the mechanism of molecular mimicry....have you considered testing your Hypothesis? Set up a study and bring us your results. I for one would love to read this type of study. Curious mind that I have.

Originally Posted By: jroc
i am not questioning the message that LSD or NSD are potentially useful treatments for AS though i am questioning the mechanism by which they work.


And I beleive this is the quote that seems to get lost in your message every time.


Where your mind goes your life follows
HLA-B27+
Dx'd 2011
manage with diet and supplements
Joined: Jun 2007
Posts: 531
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Veteran_AS_Kicker
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I love these debates. I want to learn as much about the disease as possible.
It sure beats listening to people whine about their rheumatologist and what they are not doing for them.

Joined: Jan 2011
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New_Member
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It is very nice to see these debates. I love to know new theories, hypothesis.. on AS. However , I am also not able to believe in NSD and only with high dose NSAID is helping me.. Good luck plays role also..but we arenot very lucky. Onefine morning ,there will be accurate treatment for AS, so no will suffer from this devastating disease....


Sagar
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jroc Offline OP
Magical_AS_Kicker
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Magical_AS_Kicker
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Quote:
Since you are questioning the mechanism of molecular mimicry....have you considered testing your Hypothesis? Set up a study and bring us your results.

that would be fun but is not necessary as in the case of klebsiella, AS and molecular mimicry, hundreds of scientists have already thoroughly investigated it and found it to be severely flawed.

Quote:
If, however, I have my case brilliantly won before the jury and I open my closing argument by inferring of calling opposing counsel a fool or? a hertic then just as assuredly I have lost my victory.

i think you have a valid point there wise steve so i shall make a brief summary of some of the main points in my closing address. these points are designed to address the claims that all cases of AS are caused by klebsiella via molecular mimicry.

1) despite initial claims by Ebringer that "we have demonstrated an increased isolation of Klebsiella pneumoniae from the faeces of AS patients with active joint and eye disease" these claims have been repeatedly tested and found to be false. in this paper only 30% of AS patients were found to have any fecal klebsiella and a "comparison of klebsiella carriers and klebsiella-negative patients in an active phase showed no significant difference between the immunological findings of the 2 groups."

2) despite AS patients on average having increased levels of IgA-Kp when compared to controls, it is only an average and is not true of all AS patients. in this study only 35% of AS patients had raised antibodies to klebsiella.

3) despite inital claims by Ebringer that IgA-Kp correlates with disease activity in AS, many other studies found no association. the idea that increased IgA levels are an important part of AS has been discredited as AS patients with IgA deficiency have more severe disease and it has been suggested that "increased serum IgA may actually serve a protective role against joint inflammation".

4) the 6 amino acid sequence that klebsiella nitrogenase shares with hla-b27 was originally thought to be a 1 in 64,000,000 occurence. it was later discovered that shared amino acid sequences are extremely common and that many other species of bacteria such as salmonella, e coli and chlamydia also share sequences with b27. experiments and statistical probability models also show that you can get almost any bacteria to react with a gene sequence if you try hard enough. with an estimated 23,000 genes in the human genome and 2,300,000 genes in the gut microbiome, that's a lot of potential molecular mimicry!

this only begins to scratch the surface of the many reasons why the theory never became accepted. after it was initially published, hundreds of scientists from all over the world subjected the theory to rigorous inquiry and further experimentation and found that the theory had more holes in it than swiss cheese. this is why the theory has very little credibility in the scientific community and why no new research is focussed in this area.




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Silver_AS_Kicker
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Quote:
the messages that i am questioning are the mechanism of molecular mimicry involving klebsiella in AS and other diseases...


Good enough. Just don't kill the messenger in the process.


Quote:
...and why certain proponents of this hypothesis may have an unhealthy level of attachment to it.


It is their belief, is it not? They are entitled to believe whatever they choose whether it be correct, partially correct, or not correct at all. Also, define unhealthy. Additionally, how is your place to decide what is healthy or unhealthy for another individual?


Kind Regards,
Jay

Almost all of us long for peace and freedom; but very few of us have much enthusiasm for the thoughts, feelings, and actions that make for peace and freedom. - Aldous Huxley

Was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls are now. - Thomas Jefferson
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