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

I'm sorry but the whole concept of a linear relationship...give up starch and you'll get better, eat starch and you'll get sick.... (which sometimes seems to be taken as a given in threads) has to be viewed in the context of whole body intelligence. Who's to say that, like some 'strange attractor' the pattern set up within the body in terms of reactions to starch tends to linger a while after cessation of starch, or that starch molecules linger a while too.
The other factor besides cheating folk in studies (again an element that's very difficult to hold constant) is people's judgement of what contains starch and also hidden starches, e.g. in the morphing of cooked sugar. Starch is ubiquitous as we know.
How many of us have had someone say to them, 'oh but surely a little can't do any harm?'... and one grits one's teeth and grins. But how many also say that to themselves?
Another factor is unknown reactions between the body's attempts to protect itself from starch and perhaps counteractive measures to protect against an individual's other imbalances..peculiar to that person.
This is why I feel one needs to be extremely patient and give oneself at least a year before judging. In the interim we have to rely heavily on anecdotal evidence and in the final analysis no one will give up anything until they are ready. but

Bilko,
Another question to get things clear, as Ebringer's diet trials and using NSAID's seems to be the other topic of this thread. What was Ebringer's strategy in using NSAID's? Did he let the people do the diet and continue medication as usual (NSAID and sulfasalazine) and then when ESR figures dropped build off the NSAID's. I'd reckon that this was the way he did it as in his publications he states that some where able to stop medication altogether and others still needed an occasional NSAID every now and then to cope with the irreversible damage the disease already had caused.
In this forum however it is sometimes advocated to stop NSAID together with doing the diet as the NSAID's cause intestinal damage and because they mask the effects of bad food. Though the logic of that is clear enough it is also clear that there are more risks attached to this method. Anyway I just wanted to know how things were done in the old days.
Gerard

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

Gerard,
medication was continued when the diet was started. In any case it would have been quite wrong for him to attempt to stop a patient's medication when there was inflammation and/or pain.
The only drug he stopped me using was sulphasalazine-EN; he said it was because it had lowered my ESR to the 20's and done its job. Maybe he was mindful of side effects? He never told me to stop NSAIDs, he would just ask if, and how often, I was using them. Of course I never had problems with the bute or indocid, so I don't know what approach he took with those who did. The TNF-a blockers were not available then, though my guess is he would have used them if the sulfa didn't work.
My brother, also his patient, only used the sulfa, probably because he hasn't got my iron guts.
I should also add that Ebringer was very insistent on physiotherapy and organised AS physio classes down in the gym and pool. When the hospital had budgetary problems and stopped them he was pretty furious; the only time I ever saw him express his anger, and complain our government could afford £500,000 cruise missiles to fire in the Baltic but wouldn't provide the money for basic health care.

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

Having an ESR in the single figures does not correlate with pain and inflamation. I feel too much emphasis is put on the ESR by dr.'s as to what is going on with the disease. My sed rate this month was 6. This does not in any way correlate to the pain I have had this month. Though I will say when it was at 20 my pain levels were higher. But what I am trying to say is that just because your sed rate is normal or in single digit numbers doesn't mean you do not experience regular AS pain.

There is no drug stronger than a good attitude.

Oh Debs,
first thing he enquired after was pain levels. You had to put a mark on a line running from no to max pain. Then he wanted to hear all the problems which he noted down . . . I think he knew what he was doing.

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

Deb,
You certainly are right. You remind me of Jayne who is mostly posting in the main forum. She is on the new TNF blockers (after the diet didn't seem to work). Now the TNF blocker also don't seem to work for the pain but they did some kind of bone scan revealing that there wasn't any remarkable inflammation going on. Probably the damage being done in the past is to big to notice changes in pain. Anyway I'd rather be in pain with SED 6 then 60 (unless it always been 6 of course) but I agree it is very frustrating to say the least.
Gerard

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

Hi John

What has been missing from this discussion is the other side - the AS patients and doctors who do not believe diet is a factor in AS. You and Bilko have presented lots of information to justify your argument and what is needed now is documents supporting the non-diet position. By default I have been carrying their flag but I'm hardly motivated to go searching for studies and reviews which oppose Ebringer's conclusions.

I was interested to learn that "..the rest of kickas had to give us our own forum since we were causing too many arguments...". It must be very frustrating to feel you have a better approach to AS but those with the power can ignore you from the heights of their ivory towers. I braced myself for a harsh reaction when I started this posting because I knew how sensitive the subject was and I was relieved at the response I received. I imagine you, Bilko and others have been studying and arguing about this subject for years and I was expecting some "You don't know what you're talking about!" reactions which would have been understandable. There was one angry respondent but otherwise everyone has been patient and polite.

Now to change tack..

It has not been mentioned before this but one of the reasons I raised the two group suggestion was because I wondered whether medical history leading to diagnosis could lead to different classifications of patients. Just as I differ in reaction to diet to other AS sufferers to whom I speak I also differ in how I came to be diagnosed. Is there a connection there? (if Ebringer has covered this in the documents you sent me please enlighten me as I haven't read them yet).

When I arrived to see the rheumatologist who diagnosed me he had the referral letter from the family doctor with results of tests and Xrays. I formed the impression he had already made up his mind on his diagnosis. The letter said that I had a long history of disk problems in the back; my tests had shown B27+, ESR 21 (marginal it seems); my body had stiffened up recently; the X-rays showed calcification in the spine. This seemed to have beeen sufficient information to diagnose AS. Yet I feel I could have been tested and seen by him years earlier when a disk had slipped out and the evidence may well have been the same (not sure about the ESR). But then I had not experienced any arthritic symptoms or flares and I had no sensitivity to food at all (except on those specific occasions of which I spoke earlier). These began only this year after I stopped a 3 month course of NSAIDs and led me to the conclusion that my arthritis (mainly restricted movement in the wrists, fingers, shoulders and neck but little pain) was NSAID caused 'leaky gut'.

If I had been diagnosed at the earlier time I would have sworn that diet made no difference to my condition. You comment that "...I know that there is yet another group who have sincerely attempted the diet but had no results...". I would have been one of those. Now I am totally different. Isn't it possible there are people diagnosed with AS who could be divided in the same way?

Wally

Wally - this is from another forum I visit...


Fast Food Thanksgiving

We were going to go out for Thanksgiving dinner this year, just the two of us.

I decided to buy a cooked smoked turkey at the grocery store for "leftovers" and meals after Thanksgiving. How often to fully cooked turkeys go on sale, I thought, so why not?

Then we decided. Let's just stay in this year for a change, we couldn't make up our minds where to go and haven't made any reservations yet.

So we got some instant stuffing (just add butter), some canned yams, a ready made pecan pie, some fresh frozen green beans, canned cranberry sauce, gravy from a jar. The only thing I'm going to put any effort in making fresh mashed potatoes because I loathe instant.

I didn't realize that grocery stores have made it so easy for us working people to have a nice dinner. I haven't cooked at home in 20 years.



(*Darned instant mashed potato*!!! Pffftt!!!!)


But heck.....20 years????!!!!


OMG - I can almost *hear* her left ventricle slamming SHUT.......


So....Wally......how much do you think THAT person would welcome taking on more dietary responsibility???

I *suspect* it is me you refer to as having written the angry post (Oy!!!!...Quiet in the cheapseats!!! )

And if it is, well, it is with more reason than you probably suspect.....

And whilst I would say that it is very *generous* of you to feel the way you do (about the diet) I can't help thinking that you're maybe being somewhat naive here??

This is certainly not the best of times for me to be posting, but I *cannot* sit back and read BS - and it's entirely THAT feeling which has kept me on this site....even when I had VERY good reasons to leave.....

Never make assumptions Wally

Take care,

Jan





The first and best victory is to conquer self

— Plato

Hi Jan

No you weren't the person I was referring too as a bit angry. Besides, I think people have a right to get angry over things important to them and I wouldn't hold that against anyone. I know also that some people are in pain and allowances have to be made.

I really don't understand your message. I looked back to what I had said in reply to you and there didn't seem to be anything provocative there.

You seem to suggest I was patronising to people on the diet when anyone who reads this thread could see I was a staunch advocate. I have just been questioning whether those who do not believe in it also have a case.

Are you gettng me mixed up with someone else? If not could you please make it clear what it is I have said which has upset you.

Wally

HERE HERE, Wally!
I have enjoyed reading these posts. I'd like to respond by saying I totally agree with your feelings of two groups or possibly some sort of spectrum.
Look, all of us here most likely don't have the exact same form of disease and exact same cause. I feel it's likely that we all won't have the same exact effects from diet. THEN you have folks who have had AS for years, and may not be able to differentiate between pain from mechanical damage and inflammation.
Now what I mean about perhaps not sharing the exact same disease.
There's different types of spondylitis, including AS, undifferentiated, psoratic, etc .
There's B27 positive and negative AS'ers.
Then I wonder about those like myself who have NEVER had elevations in CRP or ESR, even during times of big flares and with or without Vioxx. Obviously for me these tests mean nothing and I'm sure I'm not alone. Am I then in yet another group... those that are not "inflammation responders"?
So choosing subjects for such a study would, I think, be tricky. Perhaps sufferers of like symptoms/tests etc could be grouped together.
I would love to see such a study, as I really think that diet plays a role SOMEHOW, and that Erbringer was at least at the tip of an iceberg with his work. So many have benefited. But yet there are questions. Hopefully, someone can come along and continue so that questions can be answered.
(BTW, I do take Vioxx (not stupid yet, but do try to skip every other or every third dose, but lately can't), and believe me, I FEEL EVERY BITE OF WHEAT, when I slip up)
Thank you for your initial post and responses, I have enjoyed the discourse.

"Starting today, your kindness will lead you to success" from a recent fortune cookie