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Joined: Oct 2008
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Magical_AS_Kicker
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Magical_AS_Kicker
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Quote:
Medical science already has the answer, but it is the liberalization of science and outright scientific fraud that allows equivocation of the facts until the truth is made ineffective by paralysis.


anyone with an unbiased rational mind that reads the latest AS research would see that there is no fraud or conspiracy, only a lack of evidence to support Ebringer's theories and plenty of evidence that contradicts it. I agree that the commercialisation of medical science can lead to ridiculous outcomes including 100,000 deaths per year from C.diff in the US when a low cost treatment with 90% success rate is known - http://www.nature.com/nrgastro/journal/v9/n2/full/nrgastro.2011.244.html

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I'm all for whatever works for an individual and that should never be discredited.
We are all different dispite our common bond of AS.


The diet obviously works well for some.

Why would the diet be an across the board success if drugs and other treatment dont work on some people but do on others?

I personally tried the diet for over three months and was never as miserable. I was in severe pain and my cholesterol shot up through the roof. I had zero energy and was very irritable which is unlike me. So I will never attempt it again.

On the other hand enbrel gave me almost 10 good years before It stopped working and I started researching other ways of battling the disease.

I have heard members say "if they would just follow the diet it would have worked". That's very presumptous and arrogant. Just like doctors who blame patients for there treatments not working.

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There is no consensus on what should constitute the ideal diet.

Even this stuff about the dangers of a low carbohydrate diet needs to be taken with a grain of salt (if you'll pardon the pun).

Our bodies run on glucose as an energy source - we get this from carbs, but failing that the body has a way of breaking down protein to create glucose. Witness the Inuit who lived on protein and animal fat alone - no carbs whatsoever!

For those interested and able to spare 50 minutes I heard a very interesting discussion on Australian Radio National last night.

Titled 'Big Fat Lies'

'Most of what you think you know about weight loss is wrong! You've been lied to! Bacon and eggs are good for you. Low fat milk is not. And sugar is poison, and it's addictive. So believes David Gillespie, author of Big Fat Lies: why the diet industry is making you sick, fat and poor, who is in conversation with Paul Barclay.'

You can get to listen to it at

http://www.abc.net.au/radionational/programs/bigideas/

Cheers David


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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AS Czar
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jroc:

I have no intention of pretending to be unbiased, but if You are questioning whether I have a rational mind, I will begin demanding some examples:

Quote:
latest AS research would see that there is no fraud or conspiracy, only a lack of evidence to support Ebringer's theories


Show me.

HEALTH,
John

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Magical_AS_Kicker
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Quote:
There is no consensus on what should constitute the ideal diet.

that's true. we cannot know what is ideal for each individual however we have a fairly good idea of what isn't ideal and long term zero carb diets fall into this category. they can be tolerated in some instances but invariably result in less than optimal health in the long term, especially for those with an active lifestyle.

Quote:
Even this stuff about the dangers of a low carbohydrate diet needs to be taken with a grain of salt (if you'll pardon the pun).

or even a whole teaspoon to make up for the sodium and electrolyte excretion during the initial phases of a low carb diet - http://www.ncbi.nlm.nih.gov/pubmed/7332312

Quote:
the Inuit who lived on protein and animal fat alone - no carbs whatsoever!

whilst their diet was very low carb it was not zero carb. "Grasses, tubers, roots, stems, berries, fireweed and seaweed (kuanniq or edible seaweed) were collected and preserved depending on the season and the location"(http://en.wikipedia.org/wiki/Inuit_diet). They also had genetic and epigenetic adaptations that evolved through many generations of eating a low carbohydrate diet including larger livers, more efficient gluconeogenesis, and increased urine volume to process dietary byproducts (http://www.livestrong.com/article/486115-the-inuit-diet/). they also seem to have higher rates of osteoperosis although this is controversial.

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Magical_AS_Kicker
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Quote:
show me

in this post i quoted a couple of examples of sections in recent papers discussing Ebringer's research - https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=465605#Post465605. many other papers have similar discussions, typically along the lines of Ebringer et al originally reported things like increased fecal carriage of klebsiella, increased antibodies correlating to disease activity, molecular mimicry etc etc followed by listing the many studies since then that failed to find the same thing, and all the studies that found contradictory evidence. this is why it only gets a brief mention in most studies because scientists are focused on other more plausible hypotheses such as endoplasmic reticulum stress and b27 misfolding, th17/treg balance, effects of microbiome composition on gut inflammation etc etc.

"Our brains might be grey matter, but they prefer it when things are black and white. When life is bite-sized and reducible it makes our brain's "happy"...the brain equates survival with keeping a stable internal environment, called "homeostasis", he explains. So, in its attempts to process the mind-boggling world around it, the brain looks for certainty, control and consistency. All of which can leave us, well, narrow-minded and at odds with a world where the landscape is constantly shifting and changing colour - a dynamic environment that demands an ability to respond with equivalent flexibility and engagement."

Our big brains, advanced as they are, come with an array of complex shortcomings," DiSalvo says in his book. While we necessarily process new stimuli by detecting patterns to create a web of information, this mechanism can also set stubborn default positions that trip us up. "[The web of information] will be added to and subtracted from, shifted, adjusted, and contorted," he explains. "But, all these movements will occur within a framework derived from recurring patterns that your brain has identified, coded, and categorised." The shortcomings this can lead to includes those psychologists refer to as confirmational bias or "certainty bias". That is are our predisposition to focus on or select the pieces of information that "confirm" our opinion (of a person, a topic, anything) and disregard anything to the contrary.

"Our need to be right is actually a need to 'feel' right," he says. "Since our brains like being happy, we like feeling right. "In our everyday lives, though, feeling right translates into being right (because if we could admit that we only 'feel' right, then we might not really be right, and from our brains' point of view that's just not alright)." In the book he cites a 2005 study conducted by psychologist Ming Hsu which found that even a small amount of ambiguity triggers increased activity in the amygdalae - brain clusters that relate to threat."The brain doesn't merely prefer certainty over ambiguity," DiSalvo says. "It craves it." DiSalvo acknowledges that science is "messy" and doesn't satisfy our brain's desire for airtight answers.
- http://www.stuff.co.nz/life-style/wellbeing/6628224/Unhappy-brains-are-better-brains

it is possible that AS is caused by klebsiella via a molecular mimicry mechanism but the evidence doesn't stack up and it is often criticised as being overly simplistic. there are hundreds of species of bacteria in the gut, thousands of genes in the human genome, many possible mechanisms by which inflammation initiated by bacteria in the gut can manifest in the joints, and many potentially therapeutic diets. given our natural human bias towards preferring simplicity, certainty and control, how likely is it that AS is a simple open and shut case that is caused by 1 bacteria, 1 gene, 1 mechanism, and responsive to 1 diet, all discovered very early on in the AS research timeline by 1 scientist who's theory has been widely critized ever since in peer reviewed journals by scientists from all over the world, and who has also applied similar simplistic theories to other diseases such as rheumatoid arthritis and crohn's (which have also failed to gain acceptance by scientists) and even BSE (mad-cow disease) which turned out to be embarrassingly wrong, and led to dangerous and incorrect statements such as "BSE is multiple sclerosis in cows and therefore it is an autoimmune disease which cannot be transmitted by the consumption of BSE affected meat" and the withdrawal of research funding(http://high-fat-nutrition.blogspot.co.nz/2008/10/hla-b27-and-ebringer-speech-text.html). or is it more plausible that AS is a multi-factoral disease in which multiple genetic, environmental, nutritional and bacterial factors interplay in complex ways in the human body, some of which we are aware of but many of which we are only just beginning to understand.

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Originally Posted By: DragonSlayer
Hello, Maiga:

[quote]...... Those of us with AS do not have time for DEBATE; we must ACT and it is unfortunate we do not get the support from physicians in general ......


I do not agree that one should not debate.Debate is essential for progress, after all if no one debated things, we would still be believing that the sun goes around the Earth. Perhaps a better way would be to try the diet AND debate. That way, you can have the nbest of both worlds.


Age 56. Psoriatic spondylitis. HLA B27 negative. MRI negative.
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Originally Posted By: jroc
similar diets may actually increase gut inflammation - http://www.ncbi.nlm.nih.gov/pubmed/21389180?dopt=Abstract



probably. but one is permited to eat fiber on a high protein diet. i myself do so and try to increase my fiber intake from root veggies that are low starch.

what about the combination between meat and high carbs (western diet...) and the acid/alkaline mix that results in our stomac, preventing enzymes to properly digest both protein (animal or vegetal) and carbs and thus allowing unproperly digested food entering our colon? is this pro or anti inflammatory? does it have any impact on our gut microflora?


Originally Posted By: jroc
in that case restricting starches could be counterproductive as a reduced polysacharide diet increases Enterobacteraciae count - http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=6371220


hm. i agree that your hypotesis regarding the overall decreasing number of bacterias - including the so called beneficial ones - may explain lowering the inflammation in our gut. i believe you've stated this in another thread.
this hypotesis would explain the so called over-reaction after re-introducing starch after goind NSD. Sounds logical.

but what i cannot explain to my self is why i encounter problems when trying to supplement with so called beneficial bacterias: bifidum types, lactobacillus types and other which i cannot remember at this point.
i always respond with flares when supplementing with such probiotics.

Strange, the only probiotics i do well with are the ones comming from salt pickled cucumbers, carrots or cauliflower. No antumn tomatoes (for pickling) though. Those ones make me flare. I did not had the time to search over the internet what type of bacterias would they be.


Originally Posted By: jroc
True however long term carbohydrate restriction can also cause all sorts of problems such as increased cortisol, reduced testosterone, impaired immunity to fungal and protozoal infections, decreased thyroid function (http://anthonycolpo.com/?p=1743), gut mucus deficiency (http://perfecthealthdiet.com/?p=1077), risk of selenium deficiency & scurvy (http://perfecthealthdiet.com/?p=1139)


strange thing is that when moving from high-carb western to a low carb diet my reactions were exactly the opposite from those the guy from Perfect health diet described...

but this does not rules out the cancer optimal diet peopls risk which he revealed in one of those links. as you have said, there are risks. although i beliveve there are some sources of anti-oxidants available to us - see berries, see nuts, see carotenoids from veggies&fruits.


Originally Posted By: jroc
Testosterone is also important for Il-10 function, an important anti-inflammatory interleukin


probably - but why does AS is more virulent in males then?


agree with what you've written in this post: #465722

Originally Posted By: jroc

the success achieved by starch restrictive diets (which is genuine and not entirely due to placebo effect) is sometimes offered as proof of the 1 gene, 1 bacteria, 1 mechanism, 1 diet theory. these results are consistent with the hypothesis, but are
not proof as there are far too many changing variables.

- they can lead to starch phobia and a mind set that starch per se is the most important dietary factor to consider when there are many other dietary and nutritional factors that are equally or more important.


this is also my belief.


#465738
the DiSalvo qoutes you've served us are well received from my part.
We all work here with an inductive type of knowledge. Even the medical studies some of us use in order to assess our claims are based on such inductive reasoning. In fact all experimental studies are such knowlegde, since we humans are not in possesion of absolute knowledge.
The problem with such reasoning is that it goes from micro-knowledge (what works for me) to macro-knowledge (must work for others). Sometimes when going this way we tend to forget the fact that what seems to be the cause is not always the real, the most important or the primary one. The most important thing inductive reasoning lacks is logical validity. But is does contain plausibility and probability. Some people - and John sometimes is one of those - seem to confuse those with validity... Any inductive hypotesis - like ebringer's - can be falsified/refuted (see Karl R. Popper and his theory of knowledge). Maybe it's just a part of a bigger picture. Maybe Kb. presence it's not the first cause in the chain of causality. Maybe it's not even a cause. Forgeting this important thing means that we tend to glide away from science towards something i would call a religious belief... No arguments will be heard anymore, and no progress is available...


But, aside from this considerations, one must act based on such imperfect, incomplete inductive rationaments. Let's not forget our scale of values. Going NSD or going with meds it's not a choice made based only on bits of knowledge - imperfect as they are. It's equally based on our scale of values - our expectations, our cultural background, our way of live, our fears and so on.

This is why i, once more, claim that trying to impose or refuse such choices based only on statistical facts will not work.

It's test and wait from my part. Untill something more consistent will come from the medicine world i believe it's the soundest choice.


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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All else aside, the debate about low-carb diets is irrelevant. NSD need no be low carbohydrate. It is low in complex carbohydrates, which do not provide anything nutritionally that simple carbohydrates don't.

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AS Czar
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jroc:

I regret these are older studies that provide NOTHING NEW and are certainly not current.

The fecal carriage issue was studied by researchers who did not understand the disease mechanism proposed by Ebringer, et al. This is OBVIOUS due to the fact that they tested ACTIVE and INACTIVE AS patients without distinction. And the native association is also somewhat difficult to discern properly, without any established baseline or even controls.

You have to dig much deeper than You have to uncover the errors--just reading abstracts and conclusions will always get You into trouble.

These are not all scientific frauds (every paper by Toivanen, however, is fraudulent--he is after grant money and is rediscovering new causes for AS all the time--it is big business for him), but are misleading because they use improper methods, DOE, or techniques or are just reductions of other experiments or paper reviews--NOTHING NEW.

I put these papers right next to Ebringer's and it is VERY OBVIOUS which are genuine and which are fake wannabies for the glossy drug-sponsored 'journals.'

There is a reason we are presented with this conundrum; it is not a conspiracy but well, John Wayne may have said it best--"Life's hard--it's even harder when You're stupid." The conspiracy is of people not caring enough to NOT BE STUPID.

Ebringer had NO AGENDA, originally. It was not HIS idea that Kp causes AS--he only found ways to support this 'theory' and in the subsequent 30 years since he began employing anti-Kp therapy in his clinic, his observations are meaningful since has has seen over twice as many AS patients as any other physician on the planet and studied them on and off and partially off his LSD.

And if I did not trust him at first, I had the goal of getting better, so I proved his hypotheses for myself, which is what everyone with AS should also do because the PARALYSIS caused by incompetent even fraudulent papers on this subject allows the physicians to keep getting away with being "uncertain." I'm out of that mess, luckily. And You cannot extract Yourself if You believe every scientific-looking paper that is published; they accept almost anything these days.

Regards,
John


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