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

OK yes, I knew about the stomach lining, just didn't recognise the medical term for it. I had no idea that meat can feed klebs, though. Where does that put the hunter-gatherer diet theory? Is John vegetarian because of the meat feeding the klebs or just by choice of conscience? (I realise you may not wish to speak for another's conscience.)

  Loz

"Loving what is right is different from hating what is wrong and feeling right about it." - Roy Masters

Hi John

You and Bilko have shown a meaningful silence to the last posts I addressed to you. You quoted "...there's no use crying, and saying 'puss! puss! puss!" ../..and, if called by a panther, I sthill won't anther”. The interpretation has to be that you are unable to anther the arguments presented there.

Where does that leave us? Well first the things it doesn't do. It does not denigrate in any way the work of Ebringer which you and others have praised here and elsewhere. It does not reduce the value of the NSD / LSD diet and its contribution to the better health of AS sufferers. It does not even prove that there are some diagnosed with AS who do not benefit from the diet.

What it does show is that you cannot use Ebringer’s studies to scientifically prove there are no diet-insensitive AS sufferers, which is what you and others attempted to do earlier in this thread. Since he filtered out those AS volunteers without high levels of Klebsiella antibodies, which is not done by rheumatologists, he left open the possibility that there are among those diagnosed with AS today some who do not meet this criteria. According to Bilko, Ebringer decided they did not have AS. But since the Klebsiella antibody test is not generally done these people have been currently diagnosed with AS and we don’t know who they are.

It could be these people, the ones who Ebringer would say did not have AS, who genuinely do not respond to diet. I cannot prove that is the case but equally you cannot prove it is not.

Now I would like to change direction a little and use Ebringer to support my side of the argument. I know that this leaves me exposed among all you Ebringerphiles. But let’s give it a try.

At the time of his studies presumably diagnosis of AS was done in much the same way as it is today without the Klebsiella antibody test. So among the group of volunteers he screened for his studies there would be some who met the normal criteria which doctors use today but did not have a high level of Klebsiella antibodies (let’s call them Low-Kleb AS for short). These people had already been diagnosed with AS by doctors presumably and if they did not have AS they probably had something closely related. Why screen them out? Why not conduct the study including both groups and then report separately on the findings? If he believed both would respond to his NSD / LSD diet there would be no good reason to eliminate them from the study. In fact inclusion of both groups would surely enhance the acceptance of his studies by the medical establishment. He would then have studied all those diagnosed with AS by doctors.

Screening out the Low-Kleb AS would make sense however, if, in his practical experience as a rheumatologist, he had already learned that they did not respond to his diet. His goal was to prove the effectiveness of the NSD / LSD diet on patients with AS. It seems likely then that he screened out Low-Kleb AS from his diet studies because they would compromise this goal.

To bolster the case I will repeat what I said earlier about my own diagnosis. I believe the symptoms for which I was diagnosed AS - B27+, ankylosed back, history of back problems, pain and stiffness in the back - existed at times long before I was actually diagnosed. But it was only after a course of NSAIDs that I developed arthritic symptoms, flares and sensitivity to food. The NSAID may have caused damage to the gut which increased the levels of Klebsiella. But earlier I would have had all the classic symptoms of AS (Klebsiella unknown) with absolutely no sensitivity to food. I now have the sensitivity and I know the difference! If there are people diagnosed with AS who are like me a few years ago they would genuinely not have any sensitivity to food.

I am more convinced now than when I began this post that among those diagnosed with AS today there are some who genuinely are not sensitive to diet. They may well be the Low-Kleb AS discussed above.

Wally

Hi Wind_rider

You wrote "..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 ....". This fits nicely with what I have written to John above - the Low-Kleb AS who have "God knows what else autoimmune problems or infections".

You seem to suggest that questioning the application of the diet to any AS weakens the case for LSD / NSD , offers an excuse for those looking for one and encourages more use of NSAID. That may perhaps be so but it should not stop us searching for the truth. If there are people diagnosed with AS who genuinely do not respond to diet we should admit it regardless of the consequences.

You said “There is an exception for every criteria.” I think that the Low-Kleb AS may be that exception among the general AS population.

Wally

Well, the meat got digested, unlike all the wheat flour. As for John's veggyism I guess it is a legacy of his hippy days; I wonder if he made it to Kabul? Sadly this rumour spreading will not trouble my conscience!

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

Wally,
So far all you have managed to come up with are two people who actually didn't practice the DIET and therefore you expect me to happily agree with your conclusion the diet does not work for them. Nice try. You sound like one of those jokers over on the Spaa.

And AlohaBen, if you are posting what you ate on a diet forum, to not expect comments is naive. I'm only alive at this point because I am unfashionably arrogant, I've had this crappy disease a long time and there is only one person in this world who knows what I actually put myself thru to pass for normal, and I am not going to take any crap on that topic.

Gerard/Ted,

Thanks for the post....

That is my mode of operatioin. Low Starch... starch typically brown rice each morning. A good serving in the morning is enough to get me through the day with no issue. But of course, this does bring on the low back pain. Currently fighting it off with lots of stretching, Zyflomend (Cox 3 herb supplement) and Bromolein.

Finished the 3 day apple fast on Sunday and was by far and away the easiest apple fast for me to date... but the first since January. I plan another for late December.... results from this one seem very good thus far.

My weight is good again with the low starch, back up to a healthy 191 as of this morning.

I keep looking for answers.... and yes Gerard, I sometimes do expect a little too much of myself. Sometimes that is good and sometimes that is not so good.

Take care,

Tim



Pain is inevitable. Suffering is optional

Wally - food sensitivity does not equal the starch response!!!



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

Hey Loz there is still amylose deposited in pockets within the body which could feed "internal' Kp if such exist and also glycogen in meats which is just a form of branched starch more like amylopectin. I suspect there is a lot in pork.
Leaner wild meats would carry very little starch i would say (guess).
Now grain-fed cattle....
Hmm!
LSD/NSD is not based around John's condition each of us are different, LSD did little for me while NSD and cold turkey on NSAIDs eventually worked.
Kp can feed on di-saccharides - even the mono-saccharides if they are not all absorbed early.

Ted

Hi, Wally:

In reply to:

---

you cannot use Ebringer’s studies to scientifically prove there are no diet-insensitive AS sufferers, which is what you and others attempted to do earlier in this thread. Since he filtered out those AS volunteers without high levels of Klebsiella antibodies

---

It was not my intention to give the impression that there are no vegetarian tigers, only that Ebringer did not find any. I happen to know that there ARE diet insensitive sufferers and could have easily been in that group myself, if I had wanted to be. Extrapolating the 9-month ESR values for Ebringer's primary test cases, some of them would not have achieved a normal value until 2-1/2 years! I'm a bit less patient and so I opted for antibiotics, fasting, apple diet and total starch elimination (NSD) to speed things along.

He (Ebringer) was unable to 'filter out' AS volunteers without high levels of Klebsiella antibodies because such a group did not exist (as a group), and the rare data point that I have observed with even near-control levels (inactive group), he left in his studies on purpose; for the very reasons you wish to see them. You can look at the data directly--it is posted in the Medical section (I'm going over old territory here). If you do not want to accept the group of 450-600 individuals as an adequate sample size, that is your own choice; based upon this information, however, I have made the personal choice to not call out to any tigers or either anther any panther.

I did say before that Ebringer did not screen out ANY AS individual. Those with inactive AS were just as important for control purposes as those with active disease; please read the papers...I have been through them many times. And again, his definition of AS was much broader than conventional rheumatologists (and, regrettably, is so today), because he recognised PRE-AS (BEFORE SIJ damage).

Like you, I would never have realized that I had any intestinal problems until taking NSAIDs. I do not believe they simply 'uncovered' a lack of intestinal fortitude, they did new damage which greatly accelerated the progress of my disease. Early on, however, I did know that certain foods made my condition much worse and triggered flares. What happened originally is that I thought that these were greasy, fried foods (we fry some meat, but mostly starches), and when I eliminated meat from my diet I did not suffer as much. Now, I understand it is the combination of meats and starches that was the most provocative, and hamburger buns were the main culprit. I have (after 22 years) reintroduced meats into my diet with acceptable results (although...note to Loz...yes I have some moral issue with meat in general but more with certain specific ones which I either totally avoid or eat quite sparingly).

Antibiotics were almost certainly required to take down the occluded Kp colonies which had life cycles totally unrelated to the character of my contents (there is a speech in there!).

I'm willing (and have asked input from Andrei Calin and others) to formulate a more widespread dietary study, and with biological prices still high I believe that I could get a grant to accomplish this. If you have any input for the DOE, I would be grateful for the help.

Best to You,
John

PS: Apologise for spelling recognized incorrectly and for quoting twice from Bonzo Dog Band

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

I've often wondered about that question ( what damage i might have caused).
The pain and inflammation in my hips had begun, but no doctor had any answer for that...
it took until 1976 for me to get anyone who had any idea what was wrong; and my original
dx from rheumy #1 was not for AS but Ehler-Danlos because of joint hyper extensivity.

I was huge... 328 lbs...this was a desperate need for me; and there was a red-haired girl involved.
I actually took off 3 days for thanksgiving and a week for christmas/birthday festivities; and,
quite improbably my biggest cravings were for orange juice, lettuce and tomatos, not cake or stuffing.

However,i am one of that one tenth of one percent who lost more than a hundred pounds and in twenty-nine
years didn't gain it all back. My goal btw was 164lbs -half sized; I never made it. Got to 179 and the
red-haired girl went off with my room mate...oh well.

my precipitous health problem over the past two years was an ulcer caused by larger and ever larger
doses of NSAIDs...i'm not just a casual observer. thanks for your concerns...
aloha Ben