Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group A call for evidence based recommendations.

I still have compassion for the OP. Not just based upon his having AS but on how he doesn't see how his programming is already affecting his interaction with people.

Like on my posting about how I looked up the risks and benefits of biologics before choosing to try them and he accepted that as "evidence based" but he totally ignored my comments, on the same post, about looking up the risks and benefits of diet in regards to symptoms. And how the later had even greater benefits for me than the former.

I think that the most important aspect of AS health and understanding of the disease has come, not from the medicos but from Dr. Google and forums such as these. Before we were much more isolated and unable to even look up what the symptoms we are experiencing could possibly point to. Now, we at least have options and the very important personal experiences of others to learn from. This allows us the possibility to take some control back in our lives. Something that is significantly lacking in western medicine.

Given the rise of the TNF drugs and the soon to arrive il23 drugs I think it is safe to say that modern medicine is beginning to be very successful in treating most cases of AS and greatly diminishing its impact. A good thing since the diet has not worked for many on here or had limited impact as in my case. Hell even the board champion of the Diet, john, says he has seen the diet not work for a group of people no matter how hard they tried.

To each there own. It appears there are several good choices now and that is a great thing

Why does Kp show up + in one AS sufferer's stool test and not the other's?

I would love to see a test of some sort indicating kp's presence somewhere outside of the gut. It's obviously an issue but like Andy, I would like to see it on paper.

Why does one AS sufferer have an inflammatory reaction to one kind of starch(rice) but not to another(yams)... and vice versa? How/why could/would it possibly make that decision in different people? I completely agree with Timo's point that everyone is wired differently but it's very hard for me to wrap my head around kp's inability/unwillingness to adapt or change it's form of starch consumption. Rice is rice. Why does kp care who's body it's in?

I ask these questions not to oppose anyone or for any motive other than finding the closest thing we can get to correct opinions or answers.

I second Betty's appreciation regarding your time and energy dedicated to helping others, Dragon Slayer. Thank you.

Hi, CoatTails:



Regret there was a very flawed paper, bordering on scientific fraud, wherein the DOE (Design of Experiment) included testing ACTIVE and INACTIVE AS patients.

This is of course totally contrary to the rigorous application of molecular mimicry and the proposed concept of diet related to AS activity. But it underscores the certainty that even those who are well-paid to know the science behind what they are studying are sometimes just too ignorant to be trusted. And if researchers at this level can get it so wrong, where does that leave the poor rheumatologist (who only has time to read the abstract and conclusion) and especially the patients who are not usually even as (mis-)informed as the physicians upon whom they rely.



This is a relatively easy question to answer in general, but these answers might not apply to every observation: Within the AS community, some have insidious-onset and others an acute event (like post- salmonellosis, shigellosis, or Reiter's, etc). And a subsection of both groups have dysbiosis. But You can see the variation that occurs through just a few steps within a simple binary-restricted exponential; the differences in AS patients are expected and not surprising.

And Thank You each for understanding my passion about this topic--AS can and should be eliminated; life is difficult enough without this cruel disease.

HEALTH,
John

It isn't just a single paper that has found AS patients with active disease without any klebsiella in stool tests, there are many different studies that report this that I pointed out to you here - https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=467652#Post467652

Please do not accuse researchers of being ignorant and untrustworthy when you yourself have admitted that you are not familiar with the research as you don't see any reason to be because it is outside your field of interest.

As Ebringer's hero Karl Popper once said: "True ignorance is not the absence of knowledge, but the refusal to acquire it." - http://en.wikiquote.org/wiki/Karl_Popper

And AGAIN, jroc:

You cannot have a "negative" result for Kp; there MUST be a quantity an actual assay number.

And once AGAIN, simply stated: A person genetically susceptible to AS can do things with much less Kp than a person who is immune.

This stuff is so basic to the tenets of molecular mimicry that is is amazing You cannot find the flaws with the scientific-looking papers You promote.

I have acquired remission. THAT is the limit of my knowledge; all discussion after this is a kind of mental [manipulation...] that in no way interests me (when there is a Jaguar in this parking lot).

Here's something we seem to agree upon: You refuse to learn enough about molecular mimicry to further Your side of the debate, ergo I will likewise ignore the so well-crafted papers You reference, along with B.S. from the peanut penumbra about ONE MORE of the over 400 cytokines involved in AS and some hopey-changey FUTURE therapy: The future is NOW.

HEALTH,
John

What do you mean you cannot have a negative result? If the bacteria isn't able to to be be cultured and detected using the methods outlined in the studies then the result is negative. By your logic if you tested a sterilised needle for tuberculosis, it can't contain no tuberculosis, there has to be a quantity of tuberculosis. That is ridiculous.


I don't agree with that at all. I'd be happy to learn more about molecular mimicry if you have any new or interesting information about it. However I am already familiar with Ebringer's work and his newer papers seem to only reference his older experiments which many independent groups have already failed to replicate (except the LSD study, that has never been replicated to my knowledge).


Good for you, but why do you continue to you expand far beyond the limits of your knowledge to making ridiculous statements such as "... the science really is finished; just waiting for the medical guilds to catch up." I think that is the type of thing that Andy was talking about when he started this thread.

I struggle to understand why you respond in this way jroc. Anyone, including you, must be aware that a sterilised needle can be fully sterile, while the gut is a natural habitat for bacteria, containing billions of them, and hundreds of types.

We are also exposed to bacteria through our environment and food, including to Kp. With that being the case, a needle can be completely Kp free, but a human can likely not be.

Ok, thanks for all the replies, lively conversation as ever; good to see. I understand why posts can get very heated, after all we are all passionate about this and want the best for the members here. I hope I haven't offended anyone;

I think this should be my final post on the matter;

I appreciate what I represent in this forum; the doctors who missed the diagnosis, who wouldn't refer you, who thought you were lying about the pain, who sent you away with nothing but questions. In modern medicine, there is little excuse for such things and I hope they become less frequent.
That being said, there is a case here for "don't throw the baby out with the bathwater".

Maybe it's the role I'm in and the career I've chosen but clear scientific evidence is really very important to me when I make medical choices for myself and I think all of you would be horrified if your doctor / nurse / physiotherapist gave you advice with nothing to back it up with.

I also think you would be horrified if that person neglected to tell you other things to try that may have a little more proof, like exercise and conventional therapies like NSAIDs and Anti -TNF agents.

Treatments, pretty much no matter what, have side effects and consequences. For example, Antibiotics have a list of possible side effects as long as my arm, some fatal (like severe allergic reaction). My point is advising a group of people to take a medication on a leap of faith is not only misleading but can also be dangerous. I know to some the fact that they benefited proves a treatment works but until you have some decent studies to back that up with your advise is moot if not irresponsible.

So finally;

Please, let's be clear. If a treatment we are suggesting is not yet proven or supported and carries risks, we should really say so people can make the best treatment choices for themselves. I don't think that's too much to ask.

Thanks everyone, I know not all of you will agree but I hope it's some food for thought on the way we advise members on the forum.

Hi Andy, over the years there have been some members here who are doctors and have AS. It was nice to have them and they are truly missed. Some members tend to forget that there really are doctors, health care professionals, insurance industry or pharmacists that actually are humans too and in need of support. I miss those health care professionals whose knowledge and opinions were valued but who have left this forum due to disrespectful bashing of their profession or preference for science based research. Being programmed into an elite cult??????? I sure hope you have the patience to stick around here where most people share compassion for those with AS!