Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group discussion with DragonSlayer (DO NOT READ!)

Let me clarify some facts.

1. I tried the low starch diet, in the way I could, for one month. It did not work for me. This could be for many reasons. Maybe the diet is a placebo response, maybe it is a mistaken response to remission, maybe one month is not long enough, maybe I was not strict enough, or maybe my genetic or other factors simply make me a non responder. I have NEVER claimed that NSD is a definitely useless diet. What I have mentioned repeatedly is that there are other possibilities for people having the results that they have. That is simply good science. Even if this diet worked for me, I would still make the plea to make it unbiased.

2. I am intrigued to what a distorted mind John (dragon slayer) has to accuse me of : "I don’t want to give in to the hoax; he fooled several people here, but I recognized he set himself up for failure and his agenda was too obvious from the start." Amazing isn't it , that apparently I have done the NSD for one month as part of an elaborate hoax ! I hope I wont next be accused of being an KGB agent or something ....
The unfortunate reality is that this person is the very person who has inherited this forum (i.e. owns it), so there is not much hope for rational thoughts.

3. To those who have been trying to say that this forum is unbiased, look at what the owner of this forum has to say below. I cannot find better proof to show you how biased the owner is, than his own words below ....

"A recent member, “pspondylitis” has just completed his own evaluation of the NSD. It did not involve much effort or thoughtfulness, but only some basic dietary modifications over a very short period of time. There was no way to eliminate the subjectivity of his results or provide any way of fact-checking. Yet he wants us to put up a forum for people complaining “the diet did not work for me!”"

So quite simply, John doesn't mind people putting positive stories, without much checking of facts etc. Failure stories on the other hand, however, are suspect of "eliminate the subjectivity of his results or provide any way of fact-checking". So because the diet didn't work for me, I must be a suspect, a hoaxer of some sort etc. However, imagine, after just two days of the diet I said , i feel 100 % better. That story of course would be fully welcome, no questions asked. That is what "biased" means.

4. I believe that this forum is doing a lot of disservice to the thousands of AS sufferers who visit this forum because it is biased to report only success stories. Surely, one must have enough trust is AS sufferers that they can make up their own mind after reading positive and negative stories, or perhaps John thinks that they are too dumb to think for themselves.

5. After reading Johns post, I have realized just how rabidly one sided he is. He is also the owner of this forum, which unfortunately means that he holds the final controls. While there are other moderators, I do not believe they can or will override such a powerful character, even if they wanted to. That is of course only my opinion.

6. I have nothing personal against anyone.I am simply suggesting something that "I believe" will improve this forum for the betterment of ALL spondylitis sufferers.Our interpersonal differences are a minor issue compared to the demon that spondylitis is.

7. So in conclusion, I see no hope for change and will refrain from making further pleas for making this forum unbiased. John, you have won.

I was enjoying more the Kb/mimicity debate this thread had started with. Except offcourse the personal attacks.
I am still waiting for Jroc to come up with something constructive ideas regarding the diet approach. Post-Ebringer approach if you like.

But now the thread has been hyjacked i believe. Pspondilitys agenda prevailed over the last 2 pages. Too bad though.

Rather than disrupt the forums, anyone who has *issues* with how KickAS appears, is operated, managed, maintained, or moderated - I suggest you to write to the Admin team in private to discuss whatever constructive suggestions or complaints you may have to offer.

Let's get back to supporting each other and kicking some AS.

you'll need to get some papers on homeopathy then. at lifeforce homeopathy they "have treated and documented over 100 cases of AS with significant success rate." now those are RESULTS!


any treatments that work, will work regardless of any scientific theory.
"No theory changes what it is a theory about. Nothing is changed because we look at it, talk about it, or analyze it in a new way." - B.F.Skinner (no relation to principal Skinner).
however theories that attempt to explain the pathogenesis of diseases are not 'logically tested' simply by experimenting with treatments that are based the theory. they are tested by using the scientific method and examining the explanatory power of theory, how it fits in with the evidence, and whether the theory can be falsified. in the case of the klebsiella hypothesis, it has already been falsified.


so what would you think if a drug company disregarded cases when a drug didn't work and didn't acknowledge adverse effects. you would be furious, just as you were when you were not informed about side effects of NSAIDs. yet this is exactly what you do with NSD. you downplay cases where it doesn't work and don't pay much attention to adverse effects like when people report that their "cholesterol shot through the roof", "feeling like crap in every other way besides AS pain", "zero energy and was very irritable".


i do have the will and capacity to disprove the germ connection and the single germ connection has been disproved. there is no 'nemesis germ' or 'agent provocateur'. it is likely that gut inflammation and gut bacteria are involved in AS but it is not simply one bacteria. i don't think anybody is trying to disprove diet these days.


you just don't get it. in your head the NSD and klebsiella theory are so interconnected that you seem to think that just because someone doesn't believe in Ebringer's easily falsifiable nonsense that they don't believe in diet or self experimentation. i'm a huge fan of treating AS with diet and self experimentation.


nice try but the ancient articles are Ebringer's. even his 2007 paper just cites all his old research from the 80's and 90's that has already been discredited and his 2011 paper is just an exercise in shifting the goalposts.


if only that were so. it is obvious from your responses earlier in the thread that you actually believed that all people with AS and even all people in this 'terrestrial epoch' had culturable klebsiella. it is quite clear that you were unaware that large percentages of AS patients have no culturable klebsiella or IgA-Kp.


i agree with you there. i firmly believe that there is a link between diet and AS due to the inflammation and gut connection.


wow. way to put those main forum non-NSD nobodies in their place!

I don't know whether to laugh or cry.

For the one millionth time! We NSDers need a space where we can meet without dealing with further doubt. In every situation in my life I deal with weird questions "are you anorexic," "do you have eating issues." I also reflect and say to myself "is the diet worth all this effort?"

However, through all this doubt there is a forum far, far away in cyberspace called the NSD forum for NSDers. It's great. I need it. I don't post a lot but I read most days.

If people don't like the pro diet stance populate the other forums within the site. It is not rocket science! Geez!

Leave us NSDers in peace. Ask questions, challenge but ultimately be positive mate. Its is a sea of negativity for people with AS. We welcome debate but why would we sanction something that may put people off the diet. Let them try it. If it doesn't work what harm will it do. Let them find out for themselves. If you read the NSD section it is full of mistakes, failures, flares and frustrations. But intrinsically it is there for people to pick themselves up and have another go. Or try something else.

I wouldn't dream of making demands on the main forum and tell everyone they are wrong.

As for John, well I think he has been well and truly provoked. I may not agree with everything he says or how he says it but his genuine concern for others health is something to be applauded. I am no acolyte of anyone. But every AS issue I have had over the last 2 years has benefited from his advice. It is always the starting point for my self experimentation and research. I send him personal emails that return the next day with a detailed responses offering me alternative approaches to my condition. In many ways this advice has had a transformative effect on my life. Maybe Erbinger, John and others may be superceded with new research. So what. The average psychoanalyst has an infinitely greater knowledge of the mind than Freud ever did. The point is he opened up the line of inquiry for others to develop. But in the meantime even with limited knowledge by modern standards he helped a lot of people.

I am truly sorry that the NSD hasn't worked for some people. I am truly sorry for people who were unsuccessful with pharmacueticals...

...wait. That's it.

Dear Moderators

Could I have a sticky thread in the pharmacy forum? I couldn't hold down sulfasalazine due to chronic diarrhea. Everyone must be the same as me.
I insist that people experiencing success with drugs must be wrong.

Or maybe I could go to IBS.org and demand a forum that says IBS is in the mind.

Hmmm.

PS Debate is healthy. I reckon the main forum is a good place for that to happen. But why make demands on the NSD forum. Let it be. Make your objections heard in the main forum.

Leave the NSD section for people who need to ask questions, find support and deal with the DOUBT that surrounds there every eating moment.

Cheers

Keith

The post was mainly aimed at pspondy-disrupt-ilitis!

A debate between jroc and John is fair play I think. But that's just my own opinion.

Cheers

Keith

no worries keith. i think 99% of the NSD folk are great advocates for the diet and a great asset to the community. me and John both have CSD (chronic stubbornness disorder) and despite having 99% in common in our philosophies on AS we will continue to try and sort out this last 1%.

things in common
- former vegetarians
- believe that NSAIDs did us more harm than good in the long term
- both made significant improvements after stopping NSAIDs and experimenting with diet and alternative treatments
- skeptical of pharmaceutical drugs that don't treat root cause
- believe AS starts in the gut
- believe gut bacteria are involved in AS
- believe that diet can influence AS symptoms
- believe that experimenting with diet is an important treatment strategy in AS
- believe that fasting can reduce inflammation
- think that results are more important than theories
- genuine desire to help others with AS
- chronic stubbornness disorder

disagree on
- klebsiella hypothesis

Talking about diet and AS...

Thanks to MollyC1i

I've got it from here:
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=465884&gonew=1#UNREAD

"The researchers found that variants of the gene ERAP1 interact with HLA-B27 to affect disease susceptibility [...].

ERAP1 plays a role in breaking down proteins within the body into smaller molecules known as peptides. The gene interacts with HLA-B27 to affect how these peptides are presented to the immune system. This is an essential process for mounting an immune response to invading pathogens, but when it goes awry it can result in the immune system causing inflammation and damaging tissue"

Dont even know where to start here.

First off this is the best site I have found that made me feel not so alone with my disease. To attack the owner, admins and mods is to me very disappointing.

I have tried the NSD and it's not working for me.
I have tried biologics and its not working for me.
I have tried NSAIDs havent worked for me.

Am I upset at my Rheumy and her team? Am I upset at Dragon Slayer his team and the NSD? Of course not.

Why do I say they didnt work? I still have very bad bone marrow edema on my MRI's and it is really painful.

To me this thread was the best one I came across in my time here at this website. I love debates. I dont like personal attacks.

As far as I can see the NSD would not hurt a person in anyway.

If the line of argument strays from scientific methods and starts to pertain subjective dispositions then we will learn nothing from this thread.

Hi, pspondylitis:

I object to the way You conducted Your NSD 'experiment.' I don't think anybody really believes You gave it a fair chance to work, and even from the start, You made Your intentions very clear.

One week is not enough--I protested strongly when a different member wanted to "try" NSD for one week, and they did not even study the diet enough to know which foods were banned. One month is not much better; we did not get this sick overnight or even over just one month, and no natural way of dealing with it or pushing back will offer anything very substantial. A month of FASTING, well that is different, but You did not do that.

And it is the lack of objectivity You had and maintain, that is Your worst enemy.

So, You have in my opinion, not earned the right to declare that the diet does not work for You; even if we had a FAILURES section, Your story should not be included in it!



Yes, I am rabidly one-sided.

Yes, I am the owner of record. But I have to report to the many contributors and my own conscience, and I realize that I cannot self-govern, so I have the best Administration team in the world and they control me; I listen to their wise counsel and try to act accordingly--THEY control this site. I control nothing totally and the fact You are still here despite our disagreements should be enough to confirm that it is not my goal to silence anyone or any idea; discussions no matter how acrid, usually produce positive results.

When I am posting, I have the same status as You--just another member. And I am human and have made mistakes. When ERAP - 1 is shown to be the primary cause of AS I will admit that mistake (I'm not holding my breath).

In fact, I want REAL negative stories to help determine the success rate (because I believe NSD will ultimately be over twice as effective as Homeopathy-aka-placebo), but there must be some basic guidelines. Your test has not even come close to meeting minimum requirements. If Your hoax was unintended, it is still a hoax--You did not do what You should have done to make any such dietary measures work for You. When You do this in private, You can just discard this effort and chalk it up to experience, but when You claim in public that "diet does not work for me," that becomes a situation requiring some scrutiny.

In the end, after the din of the debate dies down, we are each alone with our disease--every one of us has the choices to make that will either cause us to get better or worse or even stay the same. Nobody on the NSD Forum was surprised when You stayed the same, again--because You did not do what was required for a long enough period of time.

When a person decides the diet does not work for them, I have not "won." But until we have proper guidelines for testing the NSD/LSD there will be no "NSD Failures" Forum.

Regards,
John