Kickas.org Forums Ankylosing Spondylitis General Discussion Helpful Tips Interesting website

Have you filled in the research questionnaire?
I am definitely going to.
My biggest wish is for health professionals and NASS in particular to take the starch free diet and the work of Prof. Ebringer seriously.
I was diagnosed with AS by Alan over 10 years ago and my symptoms went from me at the age of 23 shuffling round in slippers barely able to walk and in complete agony to being completely free of symptoms within 3 months of starting the LSD.
I phoned NASS a couple of days after my diagnosis and as soon as I mentioned the name Dr Ebringer their tone changed completely and they made it very clear that his work was not supported in any way by them. I found the information they gave me to be quite frankly depressing - the way they undermined Dr Ebringer did pull the rug out from under me but they weren't offering me any better alternatives! Dr Ebringer gave me hope where specialists had failed me and my faith was well placed because his advice proved a complete success for me.
I tested the diet when my symptoms had gone by eating something starchy and waiting for a result - I the symptoms appeared when I did and went again when I stuck to the diet again. This is enough to convince me that is works.
I am concerned that if I fill in the questionnaire and mention the NSD or Prof. Ebringer that they will dismiss it out of hand.
What do you think?
Well done for finding the Website by the way!

Farinelli - Thanks for posting that. I have filled in the form / questionaire. See IF they respond...!!

Have suggested diet, but did not mention Ebringer's name. Have ALSo suggested LDN.

Tinkerbell - NASS are very pharma driven. Their website is funded by, dada, pharma! Diet, profit does not make - to hell with the patient!

Suggest that y ou fill in the form - more of us that do so, mentioning diet, the better they 'might' listen. Keep banging on their door. Might (!) listen one day and even open it...

What part of France do you live in?

Hi Molly
I thought money might be the key factor here! Surprise, surprise!
I am going to fill in the application form - just trying to think of my question for research.
I live in the Dordogne. I am from UK but moved here for a better life I suppose!

Have heard back from NASS: "Thank you for being in touch with NASS: your suggestion will be considered carefully. Thank you for your interest.”

I posted *twice, but they don't mention 'which' psot of mine they are responding to...

Suggest that you just ask em to look into diet. "Why NOT consider starches as being a contributory factor to inflammation in AS? Suggest a extensive research into diet, LSD or NSD, as sooooo many AS patients find that a LSD or NSD diet works for them, as indeed it has for me" (i.e. you).

Following from NASS website: "Gut inflammation and spondyloarthritis are very closely linked. It is thought that the trigger for ankylosing spondylitis is a gut infection. For example, salmonella, klebsiella, campylobacter, shigella, yersinia infections (and chlamydia - a urinary infection) are associated with the development of arthritis.

"In people with AS who do not have any bowel symptoms, half (50%) will have evidence of gut inflammation. This means that people can have inflammation and infection in their gut without knowing it. The bacteria may get in though the inflamed gut to 'trigger' AS and may or may not develop into diagnosable inflammatory bowel disease in the future.

"This means that people with the genes to develop spondyloarthropathy will not develop the disease if they are not exposed to the gut infection. However, only people with specific genes will react to the gut bacteria by developing arthritis. Therefore, the link with bowel disease and arthritis is both due to shared genetics and environmental (i.e. getting a gut infection) reasons."

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OK. So, they are talking about gut, so let's talk about diet (they go 'together' innit?) Looks like a no-brainer to me...and, to most of us here.

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Dordogne - did ask several days ago, but think I forgot to 'mark' up the (your) thread! DOH! I live in Brittany. Moved here from the UK, Nov 08. Don't 'really' think that life is better here - and would LOVE to be able to consult at the Royal Bath Hospital. Sigh. Oh well.

Aren't you moving to Edinburgh?

Did anyone else get "Thank you for your paypall payment" when they hit send???!!! WHAT???!!!

Anyway, I told them I was interested in a study on disease progression in women, whether or not dietary changes are beneficial for AS patients, and how the introduction of biologic medications impacts women's reproductive system.

Totally forgot to ask about LDN! Ah well.

Hugs,

Kat - You can go back and pose a second question. That's what I did. I did diet in my first question and LDN in my second question. Yes, I did get a thank you for posting a question. No, I din't send any dosh, I don't put my banking details over the internet. Don't trust the internet...!

That's just it, Molly. I didn't send them any funds, via paypal or any other method. Just posed my question.

Ah well, it's a mystery.

Warm hugs,

Hey Tinkerbell! I actually didn't even see the research questionnaire on it. Shows how observant I am. I will go back. I found the site and it looked interesting so I thought I would post it. The section dealing with prognosis is what caught my eye!

Craig

Molly:

You are welcome for the website. Would gut and/or bowel inflammation appear on a scope? Throat scope into the stomach or colonoscopy?

Craig