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Joined: Sep 2001
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AS Czar
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Hi, jake777:

The reason I have tips to take down flares is because I have had AS for such a long time--long before this great communication medium--and I remember what helped me. In the previous eleven years, I have had only about three major flares, each one taken down rapidly by my own methods and then being extra-strict.

And honestly, even the NSD did not seem to work very well at first--yes, I noticed some reduction in intensity of pain symptoms, but I was not convinced until I decided to do a real test of Ebringer's assertion about bacteria.

Down in Mexico I bought all the antibiotics I could think of and tried each of them serially and methodically. In fact when one batch of antibiotics did not work, I was able to identify it within four days and get right back, since I had withheld several pills from each of several other date codes.

And I tried some antibiotics, some without studying them very well, so I can say that those agents that have no action against Klebsiella pneumoniae also had no anti-AS activity.

I proved it for myself--that AS is caused by a bowel germ (PROBABLY Klebsiella) and that diet has a profound role in this disease. I already knew that from my fasting experiences, but I did not know how fasting worked until Ebringer's explanation.

More than a year after starting antibiotics, I was able to stop them and also stop eating dairy products, to allow my diet alone to control all AS symptoms. It was more than three years after starting the diet+antibiotics before my gut was healed enough to tolerate some starches--first well-washed rice and then cooked vegetables, even carrots. Today I almost never react despite getting very sloppy with diet, but if and when I feel any familiar twinge coming on I know what to do--fast, take antibiotics, or just clamp down on my diet. I never want to experience iritis again, and I have already damaged my vision from this horrible aspect of AS--but NO IRITIS for over eleven years now--since NSD+antibiotics.

So, it is easy to question whether it works, and not so easy to find out for yourself but with people who do the NSD it is not really up for debate anymore. Just for the encouragement of others, however, I have done several literature searches, but the most remarkable find was made by a now former member (I am beginning to understand why NSDers are eventually banned so often), and George McCaffery: Carol Sinclair.

I did not know why so much previous literature was devoted against starches and AS: Giraud Campbell, and Edgar Cayce's biographer, Thomas Sugrue was told to avoid starches, and independent of Ebringer at first was Carol Sinclair's experiences long before she knew she had AS or heard of Ebringer and also fully independent of Ebringer was Jackie LeTissier who controlled her AS focusing upon starches in a food combining technique. Dr. Jean Seignalet, Dr. Mercola, and still others are anti-starch, anti-refined grains for AS and also for other arthritides.

These studies are not coincidental--there is far more material against starch than against anything else for AS.

But the best way is to convince yourself. You might do this by doing what Darryn has done and we all do--the round-trip ticket back to AS by going starch free for a long time--long enough to eliminate most symptoms--and then "experimenting" with starches.

The problem is that such experiments will not always produce flares; it is a dynamic statistical thing that incorporates the basic starch, the food combinations, the character of the food during digestion, the status of the gut, etc.

I do not react to rice anymore, but a couple of plates of onion rings might do me in.

We do need to take some of the subjectivity out of the NSD experience, and have a better measure of disease activity, so there are "indicators" --people with AS who have inflammation that is tracked by ESR (sed rate) and "non-indicators" almost 40% of ASers who do not have elevated sed rates with more active disease.

In over 90% of those who just do the LSD to their comfort level, ESR was considerably lower after 9 months (the chart is in the Medical Centre section AS and RA papers: something like "The Etiopathogenesis of AS and the Cross-Tolerance Hypothesis").

The chart has people with very high ESR numbers--60 and 70 but they only come down to 40 or 50 after nine months! They would then not perceive any benefit from their diet because they are still in pain. So we have people who claim "diet did not work for me" but they never had a proper measure--they were unable to give it a chance. I would have been HAPPY had I not been able to MAKE the diet work for me--I was a vegetarian!

And taking NSAIDs or any other drug to ease the pain and symptoms of AS, will make us less aware of the role of diet in this disease. It is of key importance to have the ability to "listen" to our bodies.

And to expand upon what jroc has already said--yes the integrity of the intestinal tract is key, but a person who has AS for many years is certainly harboring colonies of Klebsiella outside the gut--within the body's interstices--and these produce a constant level of AS that cannot be addressed by diet at all. In such cases, bactericidal agents are required to take these colonies down.

It is very difficult to make diet the entire answer, but it can be done with a diet like a classic Eskimo one. The real challenge is to do the NSD without so much reliance upon heavy meats and make it a bit more forgiving, but mostly to do this with better tools than just subjectively observing how we "feel;" that gets us off the hook too easily.

HEALTH,
John

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Magical_AS_Kicker
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Quote:

So the question is jroc (or anyone else) how do we heal the gut?
I'm away for a week on a university field trip but when I get back I'll post the things that I know of. Gotta run.

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This is one of the most thought-provoking threads I've seen on this forum. I'm a believer, but I think we should always ask more questions. Very good post, and I think I agree with every single thing I've read here.

Kiwi mirrors some of my sentiment when she says she doesn't care much about the science of it. It's the results that you really can't argue with. I wouldn't care if the science was against it. It's working for me...period.

John of course nails it on the scientific end as well, in my humble opinion.

Seb, if you are really only sixteen, I must say, I admire you young man. You're intelligent, and I have full confidence that with your smarts and your resolve you can kick this disease in the AS.

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Iron_AS_Kicker
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Originally Posted By: jroc
Just my opinion here - I think that one aspect that is sometimes overlooked in the molecular mimicry theory is the role of gut permeability.


Totally agree with you on that one!

I think of disease activity as being described by a multi-dimensional equation[1], so the only way to characterize the effects of a single variable is to hold everything else constant. Sadly, that's impossible in real life. Since factors other than microbial population are changing, then you could easily get random-seeming changes even while consistently "starving the bad bugs".

One of the other main factors must be gut permeability, which explains why so many people with severe AS also have serious digestive symptoms. Managing to heal gut problems seems to be a consistent theme among the diet success stories. Conversely, eating things that bacteria don't care for but your body doesn't like either is not too helpful... for instance nut and dairy allergies could sabotage some people's attempts at LSD/NSD.

There are also other things that can stir up the immune system, including injuries or other illness, so that the response to ever-present triggers such as Klebsiella (or something similar) gets amplified. For instance, my immune system went into a state of high alert as an after-effect of a low-speed car accident, and I went into a flare without any diet changes or digestive upsets. I suspect flares can be caused by fighting off viruses, even ones that are "sub-clinical" so you don't really notice being sick (just being flared for no apparent reason).

[1] Math is fun! Really! But it helps to have had a good teacher.

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Ninja_AS_Kicker
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when first readed Ebringer's theory (and the information this forum provided)i said "evrika" and become being a "believer".

have to mention that i have both AS and rectocolitis.

But right now - even as a "believer" - i have some unanswered questions:
Strage as it is - i can tolerate home made carrots juice or boiled carrots - wich when tested with iodine turn black every time. Not only i can tolerate them - but after eating them i feel better than before regarding both back and gut problems.
John said that he can hardly tolerate some boiled carrots after 11 years on NSD.

But give me some olives, some prunes, some berries or some tomatoes and i get in a flare (gut and SA) the seccond day. Not to speak of chocolate: as darker i eat it so does my mood gets: darker !

Definately my symptoms improved after NSD (4 months till now - so still a novice). So i'll stick on it no matter the questions. but still...

So - is it all in the starch&bacteria theory - or there's also a connection between what can pass our gut membrane and our body cannot handle,except this specific bacteria?
Can AS be triggered only by some bacteria (KB or other) or there are different possible causes that can rezolve in same result: joint problems that can be clinicaly defined as AS?

Must say that i never had ESR higher than 12 all since i make my test (3 years), in fact some of my darker days were when ESR was at 2-4 !!! Also my lgA were always normal. No antibodies for common bacterias that can explain my gut problems were found...


Last edited by Alinus; 04/14/10 07:03 PM. Reason: some gramatical issues

34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile
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Silver_AS_Kicker
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ask someone it has worked for and they will tell you it works. Ask someone who saw no benefit from the diet and they will tell you it didn't work for them or they have their doubts.

I think you just have to try it for yourself and see what happens for you. Otherwise I think the answers are somewhat predictable to the question smile

I have my money on ERAP1 : but hedging the bet with another shot at NSD LOL


No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes
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What exactly does ERAP1 do? I've done google search on it, but I'm still confused as to how it relates to AS.

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Hi Chris

Hope this helps

HLA-B27 Human Leukocyte Antigen B27
Located on Chromosome 6
HLA-B27 is one of 60 or so HLA-B alleles, and is a Major Histocompatibility Complex (MHC) Class I gene that encodes a peptide binding protein (in this case HLA-B27) that are expressed on all nucleated cells. The molecules consist of an alpha chain and B2microglobulin (not part of MHC) and present ligands (antigen fragments of 8-10 amino acids long, usually virally derived or ‘self’, but also can be derived from intracellular bacteria) to T-cells via CD8 receptors on cytotoxic T-cells (CTL or Tc) and also bind inhibitory receptors on Natural Killers cells.

ERAP1 Endoplasmic Reticulum Amino Peptidase 1
Located on Chromosome 5q15
The association of ERAP1 and disease is a major breakthrough in AS research.
The gene product has two known functions, either of which could explain its disease association. Within the Endoplasmic Reticulum of a cell, ERAP1 is responsible for trimming peptides to optimal length for MHC Class I presentation. Since AS is primarily an MHC Class I mediated disease, this has implications favouring mechanisms of disease generation that involve abnormalities of peptide presentation above those involving abnormal forms of B27 molecules (such as the Unfolded Protein Response (UPR)). However, the second known function of ERAP1 is that it cleaves cell surface receptors for the pro-inflammatory cytokines IL-1 (IL1R2), IL-6 (IL6Ra), TNFa (TNFRSF1A) and IL-23 (IL-23R), thereby down regulating the signalling potential of IL-1, IL-6, TNFa and IL-23 to promote inflammation. ‘Loss of function’ of ERAP1 inherited variants could thus have pro-inflammatory effects through this mechanism, that is, if you inherit an ERAP1 allele that is AS-associated it may be less functional than the other ERAP alleles.


Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.
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David, ERAP, in English (lay terms), please. lol

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Jake

here is a good thread for you to read.

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=384157&page=1

Simply put With the discovery of Erap 1 and IL 23 in AS gives us another explanation to AS. ERAP 1 loss of function may even explain why the body cannot turn off the inflammation set in motion by the triggering event.. However, there is still a lot of work left to do and kleb and other bacteria cannot be ruled out as a possibility. At least that is my take

We will see a blood test, within a year or two, I suspect that will be able to predict who will get Severe AS or Mild AS. Several researchers are reporting now that the link is strong on IL 23 and ERAP for predicting the course of the disease.

Last edited by drizzit; 04/17/10 01:33 AM.

No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes
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