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

Wally,
you are quite wrong about the attitudes required of Ebringer's patients . . . first he was our regular rheumy (& GP if you like, you could ask him about anything, he always had time) so you trusted him, and he didn't say it was just a theory he was testing but that it was an effective therapy . . . but of course people slipped off the diet or never started it properly . . . took him several years to get me complying . . . when I walked in his room he would look in my eyes and ask 'how is the diet going?' . . . evasive answers, shifty eyes . . . he checked the symptoms, analysed the blood for kleb IgA . . . he knew damn well how the diet was going!

Initially, just over 20 years ago he did have us on a 3 month trial of starch free, but didn't explain why, we were volunteers at a research clinic, and just got on with it. And was I glad when the 3 months were up, couldn't face another bloody steak. Which was why when shortly after he said, right, this is how you must eat I thought '$&!^' and struggled on with the pills and shifted evasively when he asked 'how is the diet going?'!

And just to add on his interest in studying peoples faces for reactions - when Di married Charlie he bought a full length portrait of the couple, her in ball gown, tiara, diamonds, him in his admiral's uniform drowned in medals, and stuck it up in the alcove where you walked in his room. I stood dumfounded looking at the pair and asked 'what on earth have you got that up for?' He replied, 'I'm studying peoples reactions', with a perfectly inscrutable face.

This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)

Edited by bilko on 11/21/03 09:03 AM (server time).

Hi Bilko

As an Ebringer patient you would be in the best position to comment and I have to accept it when you say that I am wrong. But could you explain why. There is nothing in what you wrote to suggest the group of volunteers included a cross-section of AS patients. I see the AS population TODAY as polarised with those not accepting the diet connection being unlikely to volunteer for such a study. Was it a difference in attitudes at that time?

Wally

Wally, it's all history now . . .

back in '77 a rheumie at another hospital asked if I would volunteer for a new AS research clinic, so I thought why not. Then we were all volunteers. But once the clinic was established people got referred there anyways, the hospital used it as a regular clinic, and Ebringer was seeing patients with other disorders as well, RA, osteo', doing second opinions etc etc. So the first of us were volunteers, then it would have been the whole spectrum you are concerned with, with all the attitudes. In all he had several hundred AS patients alone, don't know what the total was over the 25 years. So he saw more AS-ers than most rheumies anyway.

You also have to bear in mind that here in the UK with our national health system the way it is, you're lucky to see a proper rheumie in the first place and when you do you are expected to do as you are told. We can't pick and choose our docs very easily and if you don't like what you get then tough. Not that Ebringer was ever bossy, but he was persuasive and firm when necessary. If you were doubtful of anything he always gave an explanation based on science, it was never any of that rubbish you get from some 'I'm the expert, you do as I say'.

This we prescribe though no physician . . .
Our doctors say this is no month to bleed. (Rich. II)

Hi, Wally:

As bilko stated, Ebringer's groups were not pre-filtered to select out the optimistic, placebo-prone population: He could actually measure what was going on and figure out how closely the diet was being followed.

I don't know where you have been looking on line, but we have published many of Ebringer's technical papers and one in particular contains the 9-month graph. I wrote a letter to another AS site which included this information (if you send email aureq@inreach.com to me, I can send you a copy).

Selecting-out individuals for study as you have suggested would be a very good thing, and I would add that finding those who are very satisfied with their jobs and careers would also be important; some people would not really want to put forth the effort if they then had to avoid disability! But really, catching them young is the best thing because there is then no skeletal damage. We would then produce the can I do it (eat starch) just until my first hip replacement...? group [kidding!].

Educating people early enough in just how destructive and dangerous AS can become would be the most useful--if I had seen today's body coming I would have listened much closer to the raw food people and paid closer attention to Giraud Campbell's results (1978) and even many others--but I was ignorant of the starch connection until this board and Ebringer's proof and then support of much earlier work even including those subtle suggestions from Edgar Cayce!

Initially, I had the impression that the mechanism of AS was non-linear (a more complex--positive feedback--relationship between stimulus (starch) and response (flare)), however, going over Ebringer's data on the whole gamut of people attempting his London AS Diet at varying levels it is obvious that any level of abstinence is a good thing. WHETHER USEFUL levels of reduction is another matter. Ebringer's goal was to just reduce the level of damaging NSAIDs required and allow these drugs to work for longer periods before the need to switch to stronger meds. This was accomplished in most people after one year ALMOST following his LSD; the benefit was proportional to the degree of abstinence. Subsequently, Carol Sinclair found her own way after (quite keenly) figuring out total elimination of starch. After many years now she remains damage-free and symptom-free and the picture of health so that you would question whether she was ever really sick--and question HOW MANY years, too!

Yes, it will work for everyone with AS but it requires time and more patience than most patients have.

Ok...nobody else wanted to say it!--NSAIDs make you stupid. There really are two groups--those who can continue to take NSAIDs without causing intestinal damage they notice and those who cannot continue to take these drugs for one reason or another. Certainly, NSAIDs wipe out our ability to notice whether any particular food is provocative or not. GIVE THEM UP FOR A DAY?!!! Are you serious? Like that very fat woman with severe RA that my chiropractor suggested (after my great results) fasting to--"...you trying to KILL me?"

We used to die of 'consumption'...now we are dying of overconsumption.

You have been a good sport; it never hurts to talk these things over, don't give up on us--
John

A punk stopped me on the street and said: "You got a light Mack?"

Well John,... you can call me "stupid" if you like, but somehow it fails to stop me from liking and respecting you. You've helped too many out of the goodness of your heart. Good try tho . Do you feel better now?

If it is true that "NSAIDs wipe out our ability to notice whether any particular food is provocative or not" then how am I able to notice an immediate benefit to sinus pain when giving up diary? Is this because nsaids are not targeting sinus inflammation?

"GIVE THEM UP FOR A DAY?!!" Not intentionally. I last about 5 hrs max before caving in to pain. If only I were as tough as you!

Take care,

mig

Hi Bilko,

Tho I'm likely prejudiced in my opinion of my Rheumy, I find it doubtful that he could be classed as an "average jobbing" one. He is currently 'Chief of Staff' for a large T.O. area hospital, and even back in '83, was able to dx me on my 1st visit, prior to B27+ test result. When I asked why other Rheumies fail so miserably to make a proper dx for many, he was surprised saying it's really not hard. He says when someone relatively young presents with back/hip pain, AS should be one of the very 1st things considered. How many "average jobbing" Rheumies do you know of with that level of competence? He does keep up with current research and has in involved me in a study attempting to project how many Canadians with AS will likely be in need of one of the new biologics in future.

"If you look... you'll find ...the results have now been replicated, in some 18 other countries."
Have you read any of these 18 studies? These are what I am looking for. Would any/all of these be available over the internet for me to read? Any info would be very much appreciated!

Thanks for your input!

mig

Hi Wally! Hmmm, others like me? Maybe!

I've always guessed that fasting would probably work well for me. Over the decades I've noticed a tendancy to skip meals and just go without for spells, or eat only small portions. Sometimes I make myself eat just because I think I should. I can't really explain it well. When I first heard that fasting suppresses the immune system I thought... ah-ha! Perhaps my subconcious had a clue all along? I've accepted my skinny self but am nervous of potential muscle loss as I am already physically weak. Last week I visited my s-i-l and she mentioned being on a new weight loss program at work... she says it's low starch. They're allowed to eat moderate amounts of starch all day, but none after 6 pm. So far (2 months in) she's lost 15 lbs.

It is not that I avoided "trying the diet in over 20 years"... just found out about it 1 1/2 yrs ago when first coming to KA. I'd easily give it a quick test for 2-3 wks but from all that I've read in here, it's unlikely I'd notice any benefit unless I went a full blown 6 month trial. By all accounts, I think I've had AS far too long and eaten far too many nsaids. I'm self-employed and must earn $$ to avoid losing my home and could not hope of working (or walking) 1 wk (let alone 6 months) without nsaids.

I'd never try talking someone out of trying this route, nor do I hesitate to suggest nsd/lsd to those who seek an alternative. I've never considered myself on a 'side' persay as much as reflected on my own situation and options.

Yep, I waded, but wet feet are no big deal right?
And I suspect He would be just as happy on the left side!
Thanks for your interest Wally!

mig

But, But.....
Who keeps saying you have to completely stop taking NSAIDS? Slowly reduce the amount of meds as you decrease the starch intake. I don't see where a few more months of NSAIDS is going to ruin your insides beyond any hope of redemption. If it is, then must of been to late anyways.

I'm doing marvelouslyrific on NSD. Perhaps 2 Alieves a week for minor nagging stiffness from a little fusing or is it the coffee or the avacado or the cheese.....
The diet is tough to follow. Wendy's doesn't serve NSD and it's on my way to work. Damn inconsiderate of them, aye?

Allan

Hi Allan!

Who keeps saying this? Well I can't really answer that one, as many seem to follow a myriad of approaches within this concept that it is hard to really know. From what I have gleaned the basic premise is to heal the gut and that nsaids effectively do the opposite, (stupid being merely a side-effect) and wreak havoc. So after 20 yrs of nsaid use, if one was to go nsd yet continued eating nsaids... wouldn't that be like running on a treadmill to no-where?

Wendy's is no great loss, but the combo of fatigue and meal prep/cooking are a tough twosome for sure.
Glad to hear you're doing 'marvelouslyrific'!

mig

Hi, mig,

Can't resist some input here. I'm 52 y/o female and over a 20 year period took buckets and buckets of ibuprofen. I'm certain I had terrific gut damage if the gut pain and rectal bleeding were any indication!? I stumbled across this site and, desperate to regain my health, I discontinued NSAIDs cold turkey and initiated the 3-day apple regimen. Day 1 was rough, but by Day 3 my back pain and uveitis had improved by perhaps 90%. I'm now convinced NSAIDs and the "food pyramid" were killing me. The NSD restored my health. I would never consider giving it up.

LindaG

PS In addition, I've had no trouble maintaining a healthy weight on the NSD...