Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is AS a Disease or a Reaction?

Oh my gosh, thank you for the laugh. I needed it severely.

I am in what I would call a "flare" and so Reese, I will share my own personal definition.

A normal day with AS is where morning sucks, but the rest of the day is not excruciating, just "normally" painful. I am able to care for myself, but can't lift heavy pots... so my children cook, with my supervision.

This latest flare started 3 days ago, I think I maybe pushed past my limit and overdid it stress-wise. I hadn't changed my diet, was still doing NSD, trying to figure out what is keeping me in pain (maybe sugar). The differences for me are: I can't get out of bed, shower, or dress without help. I have had to start using my kiddos 8oz. plastic cups to drink out of, and use two hands just to lift the tiny cup. And as for cooking......I yell for daddy to come help the kids when I see smoke billowing out of the kitchen. yikes.


I also started fasting last night. Just taking water alone. I will then add food back in one at a time to figure out what the culprit is. I can identify with what Kat said about her skin. I had great skin as a teeneager, but in my late twenties (when signs of AS started appearing) I developed adult acne. Now that I'm off the grains, my skin is crystal clear, and I've lost 12 lbs.

Okay now someone please say something funny!!! That's enough seriousness on this thread!

I think everyone is too busy watching ineptwill and mig in the shout box

Wish I'd been there, Reese, when they all met together. I've seen some photos - I think it was probably a hilarious evening.

well it is Mig's fault. Reese sorry to hijack your thread. I usually blame Mig for it but must admit this time .......Donette was to blame......ahaaaaa

Hi, Reese:



Yes, too many times to count!

I found that WHEN I am extremely strict and also eliminate dairy, I can avoid all AS symptoms.

Problem is and has been that I wanted the diet to be able to work for most people with AS and most people are not willing to give up starches AND dairy, so I did antibiotics in cycles to see which ones I liked best and promote the combination of "semi-strict" NSD along with either SSZ or antibiotics.

Yes, the wrong antibiotics--and even the right ones at the wrong times--can have an opposite effect that can be quite severe; these are not things to be messed with lightly, but best with the cooperation of some professional (ouch...guess that's do as I say and not as I do...well, my SISTER is a professional, and I often defer to her and now my BIL, who knows more about antibiotics than her).

Belief is such a weak word--I have proven the whole starch connection using my own body either through willful rebellion or some indulgent "experimentations." Sometimes I pay the price of fasting for a week or so, but other times I just wimp out and take the antibiotics. Human failings; now I could sure stand to fast for an extended period!

HEALTH,
John

Carol Sinclair explains in her NSD book AS suffers with constant pain are in a constant state of flares.

be glad to do the hijacking, just someone else PLEASE hold the gun!

I heard that I dont care you can blame me for all your pain and suffering. Its all my fault acording to Alan Mr perfect clot.

Kevin

Hey, petesimac:



I was not going to suggest what Your logic has led You to suppose. If You don't react to starch, there is a good reason. Let be be clear about this point--we don't always react to every starch we eat; the environment must be right for the proliferation of the germ.

But from Ebringer's video, overall, this germ can be 40 times more populous in vegetarians than in meat-eaters.

And reacting to the germ is perhaps a matter of statistics confounded by hydrodynamics and some biochemistry: When I was young, despite transient excruciating growing pains, crepitus, and some psoriasis, I never thought I had AS and certainly I never had overt symptoms until I turned 20 years old. I was one of the biggest starch-consumers around and I never had such bad symptoms of anything and I was quite athletic.

Now I will tell You what probably no physician even knows and it is the single reason that peak age of onset coincides with maximum height--we get AS most often because our intestinal tract ages and the most severe aging has begun the minute we stop producing so much growth hormone. When this happens, the intestinal permeability skyrockets because lesions are not repaired as readily anymore. That is why HGH has been shown to help some people with AS.

But back to the reason we don't react every time--if we have a dribble glass and fill it with water, when it gets to the trick leak, it will dribble. Now suppose that we fill it with marbles instead of water--they don't leak out. It has to do with the physical nature of our waste when it comes into contact with our lesions--"The character of our content."



Well...er this is only sort of right because upon the resumption of consumption we will again have AS unless we assiduously eat only the right stuff. But ten days should do it because the IgA-Kp has a half life of about 100 hours.



Although it is impossible to know with "scientific" certainty, go ahead and offer any of our success stories starch! THEY KNOW WITH CERTAINTY. George knows--his ESR was over 100 the same year mine was but the difference is that he went to Ebringer and I went to a rheumatologist ("the best in the area" HA! CLOWN!). George began the LSD and I was a vegetarian taking NSAIDs, so I got severe kyphosis and George has only very slight damage.

You want double-blind randomized multi-centered placebo controlled studies? For DIET?!! No way no how no funding. We just have MYRIAD "anecdotes."

Look, You can't know anything with absolute scientific certainty, really, even with what are considered "scientific" tests. For example, Eddington's observations do not PROVE Einstein's General Theory of Relativity; the GTR provides an astounding prediction and the observation supports the theory--but there could be another explanation for the observation. In other words, when people reject Occam's Razor--ANYTHING becomes possible. It is the subjugation of the intellect by Liberal "science" that allows us a way out of the TYRANNICAL TRUTH. But REAL SCIENCE begins with the most liberal (small "L") philosophy possible--ACCEPT ALL THEORIES until they can be disproven and discarded.

Ignore the work of one scientist--Ebringer--and it is possible to then turn back the clock and accept all "theories" about AS. Dismiss his work because there were no controls or double-blind studies and it all just becomes abstractions of thought that defy logic.

Personally, I have proven Ebringer's work to my satisfaction and considerable reward of health. I have reduced his ideas to actual practice for myself; I don't care about and do not need the "it's Ok, but..." crowd. The work is finished for me--I did the diet and had moderate results but then I did antibiotics (and btw those agents that have no activity against Klebsiella also have no value in treating AS symptoms; I learned that the hard way), and the pathogenic/LGS origins of AS has predicted observations (AS caused by intestinal bypass surgery, by way of example) that were not yet available when Ebringer's predecessor first proposed the nemesis bacterium.

I am willing to talk about my experiences and share the NSD to encourage others, but there is absolutely no person--including Ebringer--who could talk me out of that which I have experienced and know fully... and so far his explanation has been the one I accept because it is the simplest and most obvious. There are also many people with AS world-wide I have exchanged emails with and the majority of them experience considerable relief from NSD. In ten years I have written to over 200 AS patients and although some are just not interested in diet, only a few total failures have happened and I cannot explain them. One fellow had to get chelated before the diet did him any good, another guy never saw any improvement on NSD but had good results fasting; I have to take them at their word, but even these are the rare exceptions; the majority of us--B27 positive or negative--achieve some level of relief through diet, and a few have decided for themselves to add antibiotics--nearly always with very dramatic results.

Good Luck with whatever You want to try, but there is not much to assail, if diet is an uncomfortable truth.

HEALTH,
John

Thanks again, John, for your kind response. However in your response to my questions you confuse more than you explain. It seems that there are always extenuating circumstances to the NSD theory, and every explanation seems to get more convoluted; very confusing.

Secondly, consider this by a fellow NSD follower in a post a few spaces above your considerate response to me:

"This latest flare started 3 days ago, I think I maybe pushed past my limit and overdid it stress-wise. I hadn't changed my diet, was still doing NSD, trying to figure out what is keeping me in pain (maybe sugar)."

So, again, if someone is on a NSD, and AS is "gone" as you say, then how can someone flare?

In the end, you're right; if it's working for you and others who swear by it, why stop? I guess, if anything, it bothers me that some treat the NSD as a "cure" for AS without the proper scientific evidence to support it sufficiently. Granted, for some there is enough evidence, be it anecdotal or a bit more scientific in nature, to justify trying it out, so no harm done there. But to say, "NSD cured my AS (even though I'm in a flare right now)" just doesn't hit the right note for me.

Peace.