Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; NSd and fusion

I have been on the NSD for over a year now. What I want to know is if this diet will stop or slow fusion? What percentage of people with AS have fusion? This is something that I can't help but to worry about.
Thanks!
Amanda

Many think that NSD will stop fusion.

Nobody can say IF you will fuse,
or WHEN you will fuse,
or how much you will fuse....

seems that since those are so unknown in everybody's life, there's really no way to determine that what you are doing (whether drugs, alternative therapies, or diet) is the reason for not fusing or for fusing.

It's like this beast has a mind of it's own no matter what we do or don't do about it. If NSD is taking away your pain and disease activity, then stick to it!

There are new studies coming out that are contradicting research even on medications.. some say they stop fusion, some say they speed it up.. some say they do nothing but mask the pain. So does anybody really know anymore? because nobody can predict what will happen for each of us.

some fuse quickly
some never fuse
some have pain and no fusion
some have no pain and fusion
some have lots of pain and partial fusion
....etc..etc...etc..

Manda,
I am worried about that too. It seems to me and my logic tells me that if we can keep moving and doing exercises, fusion just can't happen. The problem is (with me!) that as soon as I am quite sore, I stop moving... Know that is just not what I should be doing. Have to exercise soon!
All of the best to you!

Great question! I don't know if we know the answer yet. I read an article recently by a Johns Hopkins rheumatologist who said that inflammation and fusion are related yet largely separate processes. He said that Enbrel and other biologics may not be able to stop fusion. He said the jury is still out. I would assume it is true for NSD too.

Hi, Amanda:

I have met two people with AS who have totally stopped the fusion process through diet alone: Carol Sinclair, who had to treat her severe IBS before she even knew she had AS, albeit her father was extremely stooped over from it. Her SIJs are fine and she claims to bound up and down stairs fabulously. Also George McCaffery who plays tennis daily but once had ESR >100 in the same year I did but the difference was that he became a patient of Ebringer then and I did not; a decade before I met him.

Narcotics reduce the pain and NSAIDs even reduce inflammation for a brief period, but neither one of these drugs can actually treat AS--only the pain and some mobility issues. Diet beats any DMARD that I know about and it is my belief (and many others, including Ebringer's) that it will halt and possibly even turn back (Ebringer says up to two years...I needed 20 years!) the fusion process.

Health,
John

Great response Trudi! It does seem individualized and erratic.

While I totally believe that diet does affect many people's health, to say that it will stop the disease for everyone doesn't add up for me. I still have issues with Carol Sinclair's testimony because it is common knowledge that not all people fuse. How do we know if she'd fuse in the end or not? Her case was to the point she didn't even know she had AS... Plus add to that her bowel problems do correspond to the kleb theory.

I'm sort of bending towards the belief that there are more differences in 'types' of AS ... some are started by kleb, some are started by chemicals, some are started by injury, etc.... Then there's the factor of hla-b27 and the other possible genes... so we may all be experiencing 10 different subsets of AS that will not all respond to the same treatments.

My symptoms started after a pelvic injury. I've never had a case of IBS or colitis or anything like that. I remember reading my first book 12 years ago and it said injury started AS and threw the body into 'healing mode'. Which made sense since that is exactly what I experienced. Now, there are new & different studies. So really... one size does not fit all, in my humble opinion.

I appreciate all your feeback! This is such a frustrating challenge for us all to face. I guess one day at a time is all I can give. Sometimes, I can't even give that. But I suppose what doesn't kill us, only makes us stronger. Right?