jroc:

This is a canard:


Why do You suppose they would EXPECT any difference in fecal colonization by Kp? This proves absolutely NOTHING and is a wasted misdirection. AS does not magically increase the fecal Kp! This is just foolishness on their part.



IgA or IgM?

Serum is blood and there should be fewer overall IgA in blood if they are all congregated as dimer IgA-Kp within the lymph, and REACTING with our CELLS leading to cellular destruction: AS is a disease of LYMPH. Depression of certain immunoglobulin species is also common due to anergy.

Because they can measure IgM easier, that is just what they do, with near-total disregard to the published literature they are going to challenge.

Festus sees Clem under a street lamp looking for something:
Festus: “Clem, what are You looking for?”
Clem: “I dropped my gold snuff box!”
Festus: “Where were You?”
Clem: “Down the road a piece.”
Festus: “Why are You lookin’ HERE?”
Clem: “The light’s better.”

Here is certainly the most TRUE STATEMENT:



Expounding on any other point is not only misleading, but in this case totally unbelievable; I do not trust their conclusions not because I don't agree with them but because when they begin with such a strange canard, demonstrating this level of misunderstanding and logical failure, nothing they say after that can have any value or merit at all.

Second paper at least acknowledges the connection between gut and AS, as You have said, but I have no idea what they were trying to accomplish with probiotics! Yeah, I would LOVE for probiotics to help more than they do, but I would not have any way to explain such an observation.

HEALTH,
John

John - would it be an idea to contact them? Sounds like they 'might' be open to 'listening'? Nowt lost - and even perhaps summat gained...

because Ebringer cites increased faecal carriage of klebsiella as part of the case for it's role in AS - "Two longitudinal studies have shown the occurrence of a temporal relationship between the acquisition of Klebsiella in the faeces and the exacerbation of symptoms in AS patients [29, 30]. Two other groups have also found an increased isolation of Klebsiella in the faecal cultures from active AS patients, whether these patients were identified by high CRP levels [31] or defined clinically [32], but others could not find such an association [33, 34]." - http://www.springerlink.com/content/b58r068234562132/

faecal carriage is also used as evidence by Ebringer to exclude other bacteria that can cross react with hla-b27 - "microbiological studies indicate that only Klebsiella, but not Salmonella, Shigella or Yersinia, can be isolated in faecal cultures obtained from AS patients." - http://www.sciencedirect.com/science/article/pii/S095035798980024X

i take it you are meaning they should measure feacal Kp in active vs inactive AS patients rather than active patients vs controls. i can undertand that but as Ebringer himself points out there are studies that couldn't replicate his earlier findings.


actually they measured IgA as well, you'd be surprised how sharp some of these scientists are.

there was actually higher IgA-Kp in AS patients compared to controls. this is the only part of Ebringer's theory that other scientists have been able to consistently replicate. AS patients on average do have higher IgA-Kp compared to controls. unfortunately the overall percentage is still low if you are trying to implicate IgA-Kp as the main pathological factor AS. in this study only 35 out of 99 AS patients had increased antibodies to klebsiella compared to 19 out of 100 controls - http://www.ncbi.nlm.nih.gov/pmc/articles/pmc1535427/ . hardly startling stuff considering they also have elevated IgA against numerous other bacteria, higher serum IgA in general, and higher levels of secretory IgA. but as you have enlightened us we should expect "fewer overall IgA in blood if they are all congregated as dimer IgA-Kp within the lymph, and REACTING with our CELLS leading to cellular destruction".

i don't suppose you would if you don't keep up with any of the latest research on the pathogenesis of AS or intestinal immunity. probiotics can block pathogenic bacterial effects by producing bactericidal substances and compete with pathogens and toxins for adherence to the intestinal epithelium, regulate immune responses by enhancing the innate immunity and modulating pathogen-induced inflammation via toll-like receptor-regulated signaling pathways, regulate intestinal epithelial homeostasis by promoting intestinal epithelial cell survival, enhance barrier function and stimulate protective responses, modulate host cell signaling pathways including Akt, mitogen-activated protein kinases and nuclear factor-kB to mediate intestinal epithelial functions etc etc


i agree 100% with you on that one. it is very difficult to determine the significance of individual organisms in the pathogenesis of spondyloarthritis, even using the latest high-tech techniques such as metagenomics. it would have been virtually impossible to do it in the 80's armed with a petri dish and enzyme-linked immunosorbent assays.

i also agree with you on this one. when someone demonstrates consistent misunderstanding and logical failure, it brings into question whether anything they say has any value or merit at all.

Cletus sees John sitting on under a tree wearing a blindfold with his fingers in his ears and humming to himself: "what are doing there buddy?"
John: "i'm trying to prevent my brain from processing any information which might contradict my beliefs."
Cletus: "what are doing that for?"
John: "because it might mean that i've been yelling at people on the internet in capitals for the last decade without getting my facts straight first, i mean i had good intentions but ..."
Cletus: "cheer up there buddy, i once knew another wise man called John who said
There's nothing you can know that isn't known
Nothing you can see that isn't shown
No one you can save that can't be saved
Nothing you can say but you can learn how to play the game - it's easy!"

I like a good debate as much as the next person...honestly I do...ask anyone who has debated me..I'll take a different stance just to see how and if you can back up your statements.

IMHO: If taking XXX out your diet (making sure of course you are removing all of XXX), and you feel better, it makes sense to me to continue on this path.

When I removed bread, pasta and anything made with flour from my diet, I felt better. When I removed processed foods from my diet, I felt better.

When I incresed fiber...even naturally....I thought I was going to die, my gut hurt so bad and my system slowed to a crawl. When I increased good carbs...with high starch (unknown at the time), my back, shoulder and lower neck were so painful....I wished I was dead, because I could not sit, stand or lay down with out 7-9 pain for almost 4 years.

When I fasted...and my pain level dropped from 7-9 to a manageable 1-2 in time...when I removed all starch from my diet and fasted on a monthly basis, I started moving again. I've dropped a little over 20 pounds because I can move again.

When I have eaten something with starch in it unknown to me (tapioca in this case)..my pain level increased. When I fasted again and kept to NS..my pain level decreased.

I don't know "the science" behind it was well as John or others. I just know it's working for me and tweeking it for me as I go on my merry way without high levels of pain. I have managed to get my life back...and am so greatful.

Maybe it doesn't work for everyone, I don't know why or why not. And maybe sometime in the future it won't work for me either ( god, I hope not).

If removing starch completely from your diet, isn't working for you, I'm really sorry that it isn't. But don't be angry at others who have removed starch (and other things) and it works for them.

Also don't be surprised when others here who have had good results ask are you sure you are not ingesting XXX, because when I stopped eating XXX...my pain deminshed.

Most of us really want you to be pain free as well.

To me, The whole point of the science discussion is to try and understand why it works for some and not others. IF we simply accept the Kleb/starch/Mimicry theory and blow off those for whom it does not work as simply not trying hard enough or having a flawed diet plan, when in fact there is more to the story then many will never get dietary changes to work for them. I see that viewpoint on this board often.

Like JROC and John I am convinced that AS originates in the GUT and is linked to gut bacteria in some way. I also think it is obvious there are many factors involved here and it simply does not work for all of us for many, often unknown reasons. JROCS and kawasakiguys experiments/points on resistant starches are fascinating indeed.

The involvement of ERAP1 is the twist to me and, I believe, points to the origin of this disease. How that is linked to gut bacteria and perhaps different species in the gut is the fascinating part to me. ERAP1 is the key to this disease. The new genetic info is key to understanding this disease and is pointing to a gut involvement to me. Even some top researchers are talking about it again but is it just starch and Kleb for all of us. I reamin unconvinced on that one.

after two years of no starch diet I notice an improvement. When I go no dairy I see a bit more but no way I can discontinue my TNF drug or conventional treatments. Perhaps there is a missing piece here and for me that could get me off the TNF drugs by adding in Beans or peas or cutting out something else. God know what that would be given the complete lack or things in my diet.. My diet is incredibly bland and tested over and over for starch, and it is negative over and over. I haven't cheated on this diet in over a year now. Without this type of discussion there is no way I gather enough info to keep experimenting and trying to solve my personal riddle. Oh yea I did the antibiotic route as well and that did not really do anything.

Next week I see a natrualpath to talk about gut healing. The journey continues

jroc:

You have misinterpreted and misrepresented Ebringer's work (what a surprise): An individual BASELINE must be established to determine specific normal fecal carriage, before it can be determined whether or not any elevation has occurred to increase symptoms.

It is a GENERAL observation that can be applied only at a cursory level.

When Ebringer finds elevated serum IgA-Kp levels, he uses the best method for this known today: ELISA. Not old electrophoretic techniques that cannot distinguish IgA-Kp from IgG and end up with a FULL LINE OF NOTHING, because it is twice the weight of the IgA they were looking for, but it was IgA-Kp--IgA-Kp; exactly twice the weight but they glossed over this important point because they did not understand. And You missed it totally.

I would never rely upon You to interpret anything for me and since You have AS s u me d the role of chief badger, You should be aware that this sword cuts both directions. You are only asking for more grief, because still, nearly everything You know is wrong.

If You don't rely upon MY results, why should I care? In fact I do not matter--but other people do matter here and it is for them I will stand my ground.

You are welcome (and encouraged) to start Your own AS website and make it anti-Ebringer in every way possible. You are also welcome to copy all of my words, even out of context (per usual). Do I care? NO! I care about the people here and I care about RESULTS.

So, don't trust Yourself and listen to Your doctors' advice and run down Ebringer's work all You want. Your results will be MUCH DIFFERENT than ours and You are very welcome to them!

I am finished with the 'debate;' You are the master.

Regards,
John

I do believe that anyone can bring their symptoms down through the use of diet/supplements. I am not concerned with the "scientific proof" or “reason”.... I have remained more focused in my research on what people are saying about what worked for them. I have not limited my research to AS, but have looked into all sorts of people with all sorts of health issues. I think this form is great because it allows us to share what worked for us. Unfortunately, there is no exact prescription diet wise. On the surface that is what the NSD appears to be, but if you spend more than a half hour reading posts, you see that it is more complicated than that. If you try to mimic other people's diets, it may or may not work. It is a matter of figuring out what is making your own body wig out (which is what an autoimmune disease is, within simplest terms). If I followed the diet of many people here (heavy on sugar/dairy/nightshades and low on probiotics), I would think a diet did not work for me. My body also requires more diversity in nutrients than some people allow on the NSD. I had a lot more figuring out to do. I could still easily say, "The NSD does not work for me", because it does not. However, by being patient and observant, I was able to use the suggestions of people here (starting but not ending with eliminating starch) to build a way of eating and treating my body that has led me to a higher quality of life than I have experiences in over 20 years. In fact, I feel much healthier than most people around me. If you want to get better, get to work… you need to become intimately acquainted with the needs of YOUR body ... or you can spend that same energy trying to mentally conceive if the hundreds of people who have been helped with the guidance of this diet form are experiencing a placebo effect.

[quote=DragonSlayer]Hi, ChaCha:

Eventually he came back to report that, upon heavy metal testing it was found he had a massive load of mercury. After getting chelated enough, he began the diet once again and it now works for him.

I don't know enough about chelation therapy to make a decision about going down that path yet, but I do remember you writing about that before. Do you know how I could test for metals? What would cause that?

Another question: I wonder if because I have had a very low starch diet for the last 20 years, maybe going "no starch" is not enough of a change for me to notice? In the last 20 years, I have been pretty much "low carb" type of diet. Lots of protein, fruits and veggies. Very rarely, (maybe only eating at a friends house) would I sit and eat a plate of pasta. Very rarely eat bread and pizza, but when I did it would never bother me. I also feel like my AS is not as pervasive or as bad/active/systemic as others here on the board. I have never (thank goodness) had any IBS symptoms, (my system is really "regular", and almost never have issues there) never had iritis, and my pain although constant, is not debilitating. I have pain in low back and SI joints and feet daily, and only sometimes in wrists and sternum. That being said, I would love to feel better and not hurt so much, and not have to restrict physical activities for fear of being on the couch the next day.

that makes sense, thanks for explaining.

they did use ELISA to determine the IgA levels, the dna electrophoretic methods i referred to were for the testing faecal samples instead of old fashioned culturing techniques. can you please explain this double weight IgA-Kp thing further as i don't know what that's about.

i have no intention of assuming the role of 'chief badger' but if it is offered as an alternative to 'Warrior_AS_Kicker' above my avatar then I would gladly accept.

good, then I look forward to being enlightened. i am more interested in becoming aware of new evidence and learning new concepts than defending my current opinions.

if i did make a website it would not be anti-Ebringer. it would mention his pioneering work in drawing attention to the role of gut bacteria in AS, successful dietary trials in AS, and willingness to think outside the box. in the interests of a balanced perspective it would also mention the reasons why his theories never became accepted as new evidence emerged, science progressed and the titles of his journal articles morphed from 'AS is caused by klebsiella'(1992) to 'AS is linked to klebsiella'(2007).
that sounds like a great area to focus on, keep up the good work.

it's not a debate, it's a discussion. a debate is when people enter into a confrontation with preconceived beliefs that they have a vested interest in and are unwilling to change. a discussion is when people compare their views and outline the evidence and reasoning that they used to reach them. in a discussion, people don't mind being wrong as they understand that the most important thing is not whether they are right, but whether their beliefs are consistent with reality. when beliefs become inconsistent with reality, it is generally harmful to the belief holder - for example some people on LSD(drug not diet) incorrectly believe they can fly and jump off buildings. "Challenging ones belief system usually results in insult and apprehension, for being wrong is erroneously associated with failure. When in fact, to be proven wrong should be celebrated, for it is elevating someone to a new level of understanding, furthering awareness." please do not finish this discussion just yet as I haven't finished learning.

I'm not surprised anymore with knowing that some treatments work for others and those same treatments dont work at all for some others.

The no starch was a complete disaster for me. It made me more sick and I had terrible pain and flares. Overall I felt awful. My cholesterol shot through the roof on it. The diet would have shortened my life for sure.

Currently I'm working on healing the gut (see my post in another thread). Through the research and working with a naturopath I have been reading about how different foods effect different blood types. I am a type A blood. According to the theory this blood type requires carbohydrates and does not do well with a lot of meat. It might explain the reason I felt so awful on the diet.
This same author goes into genotypes also. I am considered in the "hunter" catagory. It's scary how it describes me and my tendencies. Tall, leaner, athletic lighter hair, prone to gluten sensitivities (which I have), inflammation.
It's pretty amazing stuff.
I think guys like Dragon slayer are an amazing resource for those on the diet but a real turn off in defending it as a fix for everyone. John your no different then any doctor or health care advocate or entrenches himself in his position and wont let go like a dog defending territory.