Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Two AS Sub-groups?

Hi Tim,
You seem to be different in this respect then the most of the dieters here. Some even gain weigth though I myself can't imagine how they do that. I tend to answer to your question that you might ask to much of yourself and from the diet. There are probably people here who might think otherwise but in the light of your recent history the LSD and a little inflammation (and medication) as a result of it might be a better idea then going too strict and ending up without energy and in troubles. Even better is some alternation I think. The apple diet is very good as a sort of reset for your metabolism and intestines. And between those periods you could allow yourself some cooked rice or oats to resolve the energy problems (so you can keep moving and exercising) and to gain your weight back.
When I look at myself I also do it that way although I always seem to have some level of background inflammation even after three days of apple diet. The diet is working however but I keep needing some NSAID's though greatly reduced. Maybe others have other tips.

Coming back on my previous post for Wally I'd like to add that though I believe that most people who say diet doesn't work for them haven't seriously tried this doesn't mean that there could not be some kind of division in AS'ers and their response to diet.
Gerard

"That we become twice as old now as a century ago is the work of plumbers, not doctors" -Midas Dekkers-

Hi Bilko

At least you have agreed that "It is true the IgA-Kp test is not standard path lab for AS".

I'm sorry but I just cannot understand how you can dismiss so easily the fact that Ebringer has used a narrower definition of AS than the average rheumatologist. From the evidence you have given, he required a crucial antibody test whilst the rheumatologist doesn't. This is not to doubt the value of Ebringer's work or the fact that the diet will work with so many people regardless of the criteria of diagnosis. The point I am making is that there must be many people currently diagnosed with AS who do not meet his definition of AS. The conclusions he made would not necessarily apply to them.

Perhaps you are happier to say that those who were not tested for antibodies, and in fact do not have them (we have to assume there are some), do not have AS as you said in a previous post. Then, among those diagnosed with AS, there are a number of people who do not have AS (according to you and Ebringer). Then it could be possible that these people do not respond to diet.

Of course there are people diagnosed with AS who have not succeeded with the diet because they didn't follow it rigorously enough or didn't apply it properly or for all the other reasons given on this thread. But I believe there just may be some who actually don't respond to diet. You can say they don't have AS if you like.

But if there are people diagnosed with AS who don't fit Ebringer's definition of AS you can't quote his conclusions as applying to them. That is what I said in my previous post and I am sticking to it.

Come on someone, anyone who is reading this, please back me up. This is not "subjective guff" or "trite" or "unnecessarily confusing". It is just basic logic.

Wally

Hi John

Elsewhere here you wrote "In 20 years and over 450 patients Ebringer did not find one person with AS that was not caused by Klebsiella pneumoniae ...."

Bilko said "Ebringer's classification into two groups is really very simple; he would listen to the patient's medical history to form an opinion, then if AS was suspected test the level of klebs specific antibodies. If you had inflammation and pain but no elevated klebs IgA then it wasn't AS. Otherwise it was. "

Taken together isn't that like proving the connection between HIV and AIDS by first deciding that anyone who didn't have HIV didn't have AIDS?

It seems that Ebringer had a narrower definition of AS than your neighbourhood rheumatologist. So shouldn't (that most impressive document of yours) the AS Dietary Primer be hedged with a statement to that effect? That this (Ebringer's conclusions on the connection between AS and diet) may not necessarily apply to you unless you have above the following figure in the following test ...?

Wally

Hi Gerard

Of course it is a subjective decision to decide whether people who claim the diet doesn't work for them have actually tried it properly. Like you, I don't know for certain if there are any. I just think there might be.

All the arguments supporting LSD or NSD are based on the research of Alan Ebringer and he has been central to much of the discussion on this topic. Basically I have been told everyone with AS should respond to diet because his conclusions said so. But now I have learned that his definition of AS and that of the rheumatologist who diagnosed you and me are different. So his studies do not cover the complete range of people diagnosed as AS today. That is why it was necessary to establish the "difference between the AS patients in England from twenty years ago and the patients in Australia nowadays".

I didn't bring up the subject of Ebringer and his research. I have merely responded to it. You may think it is a bit irrelevant but that view is not shared by the 'regulars' who have written on this thread.

Wally

Hi Jan

You were right. I didn't understand the last post either. I have not been on Kickas very long but I have gathered that it is rather tribal. You must be from that other Main Forum tribe. You can see the problem in communicating. It's the difference in dialect. I have visited your forum to try to pick up some of the language but it didn't work. I did learn, though, that Cheryl's mum is home and Jo's just had a birthday so the visit wasn't wasted.

You write about this forum that "..there are (far too) many ppl here who are anti-diet ..". A forum for a diet being frequented by those who are anti-diet. It just goes to show how contrary people are. There's a terrific site I know for baroque music, if it weren't for all those rap fans who get on it.

As I observe this thread (I'm getting to use these words like 'post' and 'thread' like a real veteran now), apart from those many anti-diet people you refer to, the contributors fall into the following categories -
- NSD / LSD enthusiasts
- Those who haven't had success with the diet but are still trying
- Some who haven't tried it but think it seems like a good idea and would try it if only ....
- Members of the other tribe whom no-one can understand.
- People of eminence (there are lots of these), who speak loftily and with great authority on such arcane subjects as yersiniosis, musins, glycoproteins, giardiasis, shigellosis (and they're just the easy ones), which people from your tribe wouldn't understand. They cruise the seas of the forum searching out the poor lost souls like me, struggling with our affliction and floundering in our ignorance and gently guide us to sheltered waters, from the starch-ridden darkness to NSD light, and patiently lead us to the path of truth and er.. joy and happiness.

On a serious note, I have no idea what proportion of non-responders there would be. But I think it is just as arrogant to dismiss everyone who says they have tried diet and it doesn't work as it is for the medical profession to dismiss LSD/NSD enthusiasts like you and me.

I'm glad to hear you have improved so much on the diet and hope you are not too offended at my attempts at humour.

Wally

Hi, Wally--

Just jumping in with two issues:

In reply to:

---

All the arguments supporting LSD or NSD are based on the research of Alan Ebringer and he has been central to much of the discussion on this topic. Basically I have been told everyone with AS should respond to diet because his conclusions said so. But now I have learned that his definition of AS and that of the rheumatologist who diagnosed you and me are different

---

Ebringer is only the guy who figured out the mechanism and got us our sample populations with solid scientific research: There are no less than SIX total anti-starch sources starting with Dr Wm Hay, Edgar Cayce (words to the wise; for what that is worth), Dr. Giraud Campbell, Carol Sinclair (did not know she had AS for at least eight years after publishing her IBS book), Ebringer, and recently a doctor in Pittsburgh who has a different mechanism for AS, but understands the wheat starch connection as characterized by Dr. Fine. Two more anti-starch sources are the 'raw foodies'(raw) and Dr. Mercola, but neither describe mechanisms specific to AS.

Ebringer's AS net is actually cast a bit wider than the average rheumatologist because he does not like the attitude of waiting for SI damage to confirm a diagnosis; his criteria centered on the B27 antigen and whether he could get the patient to verbalize that they had to 'roll out of bed.'. With 450 core patients and total 600 seen during the operation of his clinic, he had a pretty decent sample size. Applied to the overall world population of AS sufferers, it provides a pretty impressive LCL (Lower Confidence Level) by medical sampling standards.

"...there's no use crying, and saying 'puss! puss! puss!" ../..and, if called by a panther, I sthill won't anther.

Regards,
John

Wally, I don't have a problem with your theory, but my theory that it's a bunch of people who actually have rheumatoid (or God knows what else autoimmune problems or infections) gumming up the diet results is not going to go down well either. You also are ignoring the fact that it seems the harder this disease is treated conventionally with traditional anti-arthritis drugs, the more disasterous the results are. How can this be? How do you KNOW the drugs such as NSAIDS, are not negating the diet results? That and the fact that so many people REALLY don't want the disease to be diet related because they just cannot accept the difficulty of change to follow it make it too easy and tempting to indulge in a little rationalization to justify the seeming inconsistancy.

I predict in about 5 to 10 years from now researchers will be blaming autism on diet. You recall 10 years ago it was fashionable to blame it on the mother being neurotic and unable to bond with the child....

I had to throw that in because somewhere I read a big longwinded blah blah blah thing where some EXPERT said people who attempt to alter the course of diseases by following very strict diets just do so because that way they get a feeling of control on a helpless situation, and likened it to having, in its extreme, obsessive compulsive disorder. Oh thanks a lot.

It's still chicken-and/or-egg, they who do not diet say it does not work. Or does it not work in they who won't eat it? Okay, if you DON'T eat it, it won't WORK!! Bravo! But would ya then be so kind as to hazard me a guess as to just WHAT is causing your inflamation? Surely if one's gut is inflamed it would not be that far fetched to hypothesize that it could be the food in the gut? Yet there are people across the river who are vehemently, violently opposed to this theory! Why are they so upset about this? I cannot just go making up stories to make them feel better about themselves, can I?

Obviously the entire disease/diet mechanism is not understood if you have patients with the disease who are still HLA-B27 negative, or have seemingly perfectly normal bloodwork yet perfectly ghastly spines. There is an exception for every criteria.

Tim i'd advocate Gerard's approach of apple fast then a period with some rice as a sound one too.
As i've said, it'd be interesting to know what your body does with nutrients, fats and bile....
Another thing, starch is multiple glucose. I wonder how you do on elementary sugars - glucose of course, but mannose and glucosamine are used directly by cells, they do not need a glucose stage! There is some evidence that fucose may be similar so the only difficulty is suitable sources and quantities.
I found this recent apple fast extremely enervating - got back into running the next day after an eight week break and established that all my residual pain is osteo damage. Hope it does similar for you.

Ted

Hey Bilko - bit of skeet for you fella - apparently said doctor will be retiring shortly.

Obviously how this will affect NASS remains to be seen, he might even keep his hand in there? So to speak! *cue funny picture*

Take care,

Jan


If my life is for rent and I don't learn to buy

Well I deserve nothing more than I get

'Cos nothing I have is truly mine

- Dido

Hi Loz,

It's weird to think that the old KA site is out there floating in cyberland, currently innacessible?? Weirder still to think that it can be made obtainable again...??!!!

Hey, whilst I'm certainly not a techno-babe, I'm not a puter-doofus either - and I'm more than willing to accept that those here who do know about these things, will make them happen if they have the knowledge and determination to do so.

Do I have to read everything under the sun, the sky, anything out there in the known universe to know this and to trust this process?? No - of course I don't!!! And an even bigger NO to the pseudo-troll who wants the thorough investigation of the UNknown universe before this whole process can even proceed....*sigh*

Hey Loz - one interesting feature I noted on the old site (and a nursing forum I frequent) is being able to set up a poll. Think it would be interesting one for this post:

(a) who got the NSD analogy?

(b) or did you just hear a great big *whoosing* noise??

The two NSD sub-groups HAHAHAHA!!!!! (Ok, now I know it's time to stop...I know my SOH is on the darker side of black and not everybody gets it...well, apart from other nurses and medical staff)


Hey, think you might be onto a winner about the ten fingers, one mouth thing....or is that just wishful thinking??

I know I lost it earlier this year, because it was so unlike "me" - normally I am Ms. Cool, Calm and Collected and I am frequently described as being "serene", but that has been far from what I have felt in the last year. At one point (my bad point on here) I frequently felt as if my head was going to implode.

As I said, this has been my worst year by far, and even if it had been my very best, my BS filter would still be finely attuned, and instead it has been MEGA-attuned - well, for the most part! (I actually wish I'd taken more notice of it at times!)

Knowing that I'm just about to embrace (haha) the very worst of my issues concerns me as whilst I know that it's kind of inevitable I will feel increased stress, what I really dread is feeling that *imploding* feeling again. Both issues have the potential to drag on, which doesn't help, but knowing one will be easily more rapid than the other does. *Phew!*

Ahhh, Loz....just want to get feeling like ME again.......*sigh*

And hopefully earnest posters (supreme 'giving the benefit of the doubt' here) like Wally won't set my usually-sensitive-anyway-BS filter off, and get me wound "up a height" as they say in some places in the NE... and of course, I am better prepared this time, notjust for my reactions, but my reasons for them (which is the important bit)

Thank you for wishing me well and for your kind words, Loz.

Hope your visit to Loros goes well, I'm sure you'll get a lot of comfort from it.

Today has been the first day of the "Light for Life" of the Hospice here, I'd wanted to go to the ceremony but ended up stuck at work. Although I was upset at first, I knew that being there wasn't what mattered, it was what was in my heart and soul that counted...like for most of life's *events*...

Take care Loz,

Jan


If my life is for rent and I don't learn to buy

Well I deserve nothing more than I get

'Cos nothing I have is truly mine

- Dido