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

@John
i believe you misunderstand jroc.

he does not denies lsd/nsd role in AS management.

what he asks from you is to accept that there more involved than your present theory (Ebbringer's) in AS explanation.

you tend to rely too much on your personal experiences and state them as general truths.

that sounds like a good strategy and a perfect example of how being aware of a potential risk allows you to take steps to minimise it.

in terms of acidity in the stomach compromising enzyme digestion of protein and carbs, humans have been eating mixed macronutrient meals for thousands of years and prefer them over separated macronutrients so i doubt it is an issue. in terms of undigested food entering the colon, dietary protein is the main substrate for colonic hydrogen sulfide production which is toxic and inflammatory - http://www.ajcn.org/content/72/6/1488.short. hydrogen sulfide is thought to play role in UC - http://www.springerlink.com/content/q212420164588062/. sulphate reducing bacteria are present in higher numbers in AS and also UC patients (unlike klebsiella) compared to controls - http://rheumatology.oxfordjournals.org/content/41/12/1395.short. diets lower in meat and sulphur have been shown to benefit UC patients - http://gut.bmj.com/content/53/10/1479.abstract. in contrast resistant starch is broken down by gut bacteria into butyrate which is anti-inflammatory and can improve IBD - http://www.springerlink.com/content/duta93ptp1rr6wtc/. resistant starch can even protect against harmful protein metabolites - http://www.ajcn.org/content/63/5/766.short

the effects of probiotics are very strain specific. different species of lactobacilli or bifidobacterium can have quite different effects. these two papers discuss some of the different immunomodulating properties of different probiotic strains - http://jn.nutrition.org/content/130/2/403.short, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2701523/. they can modify the th1/th2 axis and also the th17/treg axis. depending on the current state of your gut microbiome and immune system a particular probiotic strain could modulate gut immune function in a favourable way towards homeostasis or increase polarization. some strains can increase Il-6 which is associated with disease activity in AS. multi-strain probiotics are generally well tolerated in UC so your case is slighty unusual. two species of lactobacilli have been trialed successfully in spondyloarthropathy associated with UC - http://www.europeanreview.org/article/629. E coli Nissle 1917 also appears to be a promising single strain probiotic for UC - http://tiny.cc/ixdxbw. probiotics can also stimulate secretory IgA which could lead possibly lead to a die off effect and temporary increase in inflammation.

he was talking about a very extreme almost zero carb diet so probably not comparable to low carb where there is still a reasonable carb intake. in the early stages of glucose deficiency, the increase in stress hormones (catecholamines) can lead to increased feelings of energy and alertness.

i don't know

it's interesting you mention that as Ebringer's latest paper attempts to use 'Karl Popper sequences' to implicate klebsiella in AS - http://www.ingentaconnect.com/content/ben/crr/2011/00000007/00000004/art00009

too bad i can read only the abstract. would be great to read the whole paper.

i've tried single-strain probiotics, multi-strains probiotics and so on. all with the same result - joint and gut flaring.
unfortunately there's no e coli nissle 1917 or VLS#3 probiotics available in my country.
the die off effect i believe can be rule out. the progression of the flare increased during the taking of the probiotics (the longest term i've tried them was 4 weeks).

the acidic/alkaline digestive problem was discussed by a home nutritionist (a good and worthy one). too bad it's papers are in my language. the point is that combining highcarbs with meat will alter our gut flora and increase bad strains numbers.

i am aware of the sulfide thread and i avoid such foods. strange is that i can do well on a exclusive meat diet. more than well in fact, but one cannot sustain more than a few days with such diet.
regarding butyric acid and resistant starch - my gut/joints always overreact to those sources. i've long stopped trying. even butter seems a problem.

as i always say - there's no such thing as one size fits all.

I have mixed feelings about this thread.

I appreciate the fact that a debate helps but on the other hand this is not philosophical debate. It's about something that affect us the participants very directly.

I love the welcoming and affective community that I encountered here, it has helped me a lot. I do not wander on the other subforums enough, so I mean mainly in the NSD subforum. So to see posts in my point of view very aggressive towards what has helped others, and directly towards valuable members of the community, well, it makes me angry, I might not react to it in an angry manner but I surely feel it.

Friedrich Nietzsche showed us that humans first will something, then construct arguments to defend it. Seems to me that the NSD is so restrictive to some that they wished it was not helpful.

I was thinking of suicide before I adopted the NSD. I can tell you now that even tho some days I wished I could eat some carbs right of a plastic package, I love my almost pain-free (no pills) life and my healthier every day body.

I eat plenty of fiber, and lately not as much protein as when I started. The risks some mention about lack of fiber and abundance of protein is more pretext IMO, the diet is starch-free no Full-Protein-No-Fiber-At-All.

The diet works. If its not working for you, keep at it, tweak it, embrace leafy greens, you will love them later.

Sorry if I offend anyone.

The diet is probably one of the healthiest diets one can possibly eat. But it is still important to have a fair dialogue about its effectiveness.

i think that sums it up perfectly. that's one of the main things i have learned from participating on this forum. for example ...

probiotics - great for sue22, terrible for alinus
sulfasalazine - great for philsta, terrible for molly
NSD - great for chicharito, terrible for finnari
biologics - great for finnari, terrible for gbash
...and so on for almost any treatment imaginable.

this thread was started by mentioning the need for balanced reporting that acknowledges both successes and failures. i think this is an important issue, just as it is important to be aware of any potential negative effects that a particular drug or diet has as well as the potential benefits. being aware of a potential side effect is not a negative thing, they are far less likely to occur if you are aware of them and take steps to minimise any potential risk. with better information, we can make better informed decisions.

the great thing about a forum like this is that we can all suggest potential treatments to others based on what worked for us. we can inform people of our experience with particular treatments, any tips/tricks/tweaks, and any theoretical rationale behind it. it is only when we insist that our own experiences/treatments are somehow more valid than someone else's that we can get ourselves into trouble. imagine how silly it would seem if a group of patients for whom probiotics were an effective treatment accused alinus of simply wishing that that they didn't work for him. in this case it doesn't matter how much theory supports the use of probiotics, or how many people have been helped, for alinus they simply do not work - end of story. science doesn't unanimously support any particular drug or diet, and neither do people's experiences. if we all acknowledge this complexity, we can pool our combined knowledge and experiences together in a constructive way to help each other to kickAS.

GREAT postjroc!

I think that it is important here to know that nobody is personally against anybody else. We are bonded by having a desperate disease. I think that there are some who are willing to accept things quite easily, whereas there are others who want to question things, to find the truth. Eventually, to find the truth is important. There is a possibility that there COULD BE some who have improved AS symptoms, because the disease has naturally gone into some form of remission. That group of patients could be suffering a restrictive diet unnecessarily . Medical research is not going to happen because of funding problems. So it is up to us here in the forum to try and find an answer. That is why, i think the best thing one can do is to try the diet, but also report it to the forum, positive or negative. The forum is currently heavily "pro diet", which may put people off in reporting negative outcomes of the diet.

The way I perceive it is that the diet doubters have a sense of guilt. Should you have made a fair run (no, not a week or some other short duration of time) at it and it was ineffective, then your conscience is clean. Otherwise, people like to bash it cause they have a guilty conscience. My take anyway...

P.S. Chicharito, the angry icon accompanying my post is for you. This is also why my avatar is The Hulk, cause I'm furious. One day, when I am not so angry, my avatar will will revert to David Banner. Until that day...

increased anger is often reported during excessive carbohydrate restriction. low carb diets are associated with "higher levels of anxiety, anger, stress, mood disturbances, fatigue, depression, poor physical exercise performance, and less vigor and imagination [147,148,149,150]." - http://content.karger.com/ProdukteDB/pro...roduktNr=223977

i have never before come across an issue that causes such a divisive and emotive response in people. whether it's low carb diets for weight loss or diabetes, LSD & NSD for AS, specific carbohydrate diet for IBD, or the GAPS diet for neurological disorders, they seem to create a far more extreme emotive response than would be expected. the debates regarding NSD and AS share many similarities with other debates e.g. low carb diets for diabietes, and people will go at it hammer and tongs on various forums and blogs, including well respected scientists. the emotive rhetoric and personal accusations even make their way into academic journals. for example the article linked to above is titled 'Low-Carbohydrate Diets: A Matter of Love or Hate'. in a journal article on carb restriction and diabetes, Feinmen & Volek blame "personal hostility towards Dr Atkins" as a reason why low carb diets are not currently a mainstream diabetes treatment as well as "hostility of establishment nutrition toward low-carbohydrate diets." the reasons for this perceived 'hostility' are sometimes given bizarre explanations. Gary Taubes (a popular low carb guru) claims that "This hostility stems primarily from their anxiety that Americans, given a glimmer of hope about their weight, will rush off en masse to try a diet that simply seems intuitively dangerous and on which there is still no long-term data on whether it works and whether it is safe." in this thread alone, perceived hostility towards diet has been interpreted as resulting from wishing that diet didn't work, guilty conscience, and my personal favourite "The conspiracy is of people not caring enough to NOT BE STUPID." for some reason whenever a discussion of evidence shows carb restricted diets in a less than 100% positive fashion (even when all the evidence of the benefits are given a fair hearing), proponents often become defensive and interpret hostility or conspiracy when there is only a genuine interest in a balanced discussion. this appears to be universal regardless of which type of carb restricted diet is used, which disease is being treated, or the education level of participants.

if something works for you, that's great. we are happy for you . nothing anyone can say or do can take away that success. if it turns out that AS is caused by nuclear particles leaching from toenails, it doesn't change the fact that a restricted starch diet helps you. there is no need whatsoever to feel angry when people want to examine the evidence and have a balanced discussion.