Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Failures of NSD/LSD ?

Having been here 10 years and moderated 6 to 7 years, can say that politics and religion are easily more divisive than diet, they just come up less often.

Diet in past 5 years is pretty calm topic compared to how it was at one time.

i think you're right on that one. i should have said "medical issue" and even then there are probably other far more controversial medical debates.

wow it must have been an interesting/controversial time back in those days.

Quote:
Diet in past 5 years is pretty calm topic compared to how it was at one time.

wow it must have been an interesting/controversial time back in those days.

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It was. I came in on the tail end of it... To 'my' eye, when John took over from Peter there was a subtle change of emphasis. The diet forum is much more interesting now and we have the well used recipe forum to boot.

Kind of insulting to me actually. Given that quite a few on the board have tried it for over a year and still have not made it work that well. iodine and everything. Is the two years on NSD I have put in enough? with everything on the diet iodine tested and no dairy? I do see some benefit but no miracle like many on here post I should. OH wait I am just not trying hard enough I get it now and I feel guilty about it. please......

how about another long term poster who tested everything with iodine for over a year and saw no benefit.

sigh

Then you will be insulted. Not my concern if your skin is not so thick. Perhaps you wear your bleeding heart on your sleeve.

Based on what I conveyed, I wouldn't think that you would have a guilty conscience. You have seemingly given it a fair run as far as duration. I can't enforce what you eat (although the government surely has other thoughts). This is a situation when you cheat (if you do), you are only cheating yourself. If it doesn't work for you, it doesn't work. I didn't imply that it will work for everybody. I did imply, however, that those who gave it a FAIR trial, and did not realize benefit, will have have a clear conscience.

I too, tried NSD, was very strict, tested with iodine for about 6 months. I WISHED I would have felt a difference. I did try no dairy toward the end for about 2 weeks, but by that time I was so disappointed, when no diary didn't seem to do anything, I gave up on the diet. I would have kept up with it had I seen any change in my pain level, but I did not. However, I think there have been enough people on this forum who have had success, I think anyone even slightly interested should give it a good try. Why wouldn't you try something that so many have had great success with?? I do applaud anyone who tries this diet--it takes a good deal of discipline, but if it helps you, I would think it would be well worth it.

From my own experience though, it was a major disappointment. I felt really sad and down and dejected because I wanted so badly for this to work. (and I tried so hard to make it work!!) So, just be cautious if you try it and go in hoping for the best, but don't be too let down if you give it a good try. Just like some drugs work for some of us, and not for others, I think this diet works for some, but not for others.

I would like to figure out why it didn't work for me (B27neg?--but then again there have been other people who tested negative who had good results). Maybe if there was more discussion and studies we could figure out something else that would work better (food/supplements/drugs) for those who were not successful with NSD.

I am not personally offended don't take that wrong. Message boards are not worth getting wound up over for sure.

I took you to mean that if you said the diet did not work, then you simply did not try hard enough or give it enough time. Hear that one a lot on this board.

And I took your comment to imply it would work for everyone. Perhaps I miss read it because it is obvious that people have various degrees of success on the diet and yes even those who truly give it a good shot.

I think a lot of people have their heart on a sleeve on a support board. hmmm you know looking for a little support. To assume or imply that a diet doubter, is well just not serious about it, is probably an incorrect assumption.

too much english here

Hi, ChaCha:

It is very frustrating that You did not find any relief from NSD. There have been several failures and I never doubted them that they were doing the diet in absolute earnest, but just could not find any benefit from it.

But there was one, and I recently related his story, who fasted and found fasting very productive in relieving symptoms but upon eating anything at all, his symptoms would immediately reappear. He knew there was a food/digestive connection but was totally unable to figure it out--we did diet troubleshooting and more. Eventually he came back to report that, upon heavy metal testing it was found he had a massive load of mercury. After getting chelated enough, he began the diet once again and it now works for him.

The other stellar failures did not have such a happy ending despite several even trying some antibiotics along with the diet. But if I count six failures, I have over sixty that do so well on NSD that I continue to encourage others to give it a try. Over the past 15 years I have corresponded with over 800 people directly about AS and about 200 with very positive results from diet alone; some few require antibiotics as I once did.

So I cannot say I have the answers for You, as I cannot even explain the mercury (in primates it has been found that mercury seems to 'harden' the gut bacteria, making them less susceptible to both antibiotics and the hosts' immune system) issues adequately.

Anyone with long-standing disease has probably noticed the symptom progression and I believe that, even after ten years, some impressive percentage of AS activity is not due to the character of our contents, but due instead to established and increasing colonies of our nemesis bacterium. The complexity is in this direction of individual histories, I am by now convinced.

But You have the right attitude, and I hope You find relief by some method. The Road Back Foundation has local physician referrals, if You are interested in pursuing in this direction.

HEALTH,
John

getting back to some science for a second

in this 2002 study, the median disease duration was 14 years. they used state of the art denaturing gradient gel electrophoresis and polymerase chain reaction techniques as "previous studies investigating the intestinal microflora in AS have been hampered by difficulty in culturing the anaerobic bacteria which predominate". they found no difference in fecal colinization by klebsiella between AS patients and controls however they did have increased levels of sulphate reducing bacteria. serum antibodies to klebsiella were lower in patients compared to controls. from the discussion section - "Considerable research effort has been directed toward the involvement of Klebsiella pneumoniae in the pathogenesis of AS. The reported results include the presence of K. pneumoniae in faeces during active inflammatory disease, elevated serum antibody concentrations reactive with K. pneumoniae in patient sera, and antigenic similarities between HLA-B27 and Klebsiella nitrogenase. The reported studies are contradictory, however, and an unequivocal role for this species in AS has not therefore been identified." - http://rheumatology.oxfordjournals.org/content/41/12/1395.short

it is worth noting that this group of researchers believe that AS originates in the gut with intestinal lesions, increased permeability and a loss of tolerance to commensal bacteria. they are not affiliated with any drug companies and have even trialled the use of probiotics for spondyloarthritis - http://jrheum.org/content/37/10/2118.short. they are currently investigating the links between gut bacteria, the immune system and spondyloarthropathy.

there is no doubt that starch restrictive diets have potential in treating AS regardless of the mechanism and it is fortunate that there is a long term clinical diet study that proves this. i am sure that with more balanced discussions such as in your recent post, more people will be curious about experimenting with them, rather than being afraid that they are being sold some sort of miracle snake oil treatment.