There can be plently of pitfalls along the way to the unitiated, which is why the support and knowledge that have been there is important. If you're not responding to it, there is generally a good reason why.

Exercise is important too, actually it is non-negotiable, some form of exercise should be done daily with AS.

My personal favourite is Pilates, and the diet has enabled me to do the full programme, as before I was frequently in too much pain to go beyond the warm-up.

Best wishes,

Know what? Turned out to be the best thing I ever did. My pain is minimal, I can sleep, I have energy. I feel almost as good as I did before my AS started. This kooky sounding diet has given me my life back.

I would strongly advocate anyone trying it. You too could feel this good!!!

BTW, I was doing all the researchy-stuff, but Ebringer had huge blocks in his way preventing full research of his work. That's why a lot of Rheumy's don't advocate it.

I'm not worried about the lack of published evidence, he did a lot of work over some years, and a lot of his patients continue to reap the benefits.

All that really matters is that personal research has shown it WORKS, better than any med could. What more could I possibly want?

Take a look at www.kickas.org folks, there's info on the front page, and a designated NSD forum inside.

Take care,

One exercise that works really well for me is climbing stairs. Somedays i go to a location where there are about 210 stairs in a row and run up and down as much as i can. I must say that for me, this is the only exercise that i can do painlessly and get an incredible cardio workout. I would recommend it for everyone whos knees are in good shape(as long as you maintain good posture and some good sports shoes).

Swimming is another story! When i am in water i hyperventilate and have difficulty breathing. This is mainly due to a childhood incidence where i nearly drowned. Ya, i know i should be seeing a psych for that!!! Soon, i hope!

Keeping active is so important, but it is no guarantee that your pain will be eliminated totally.

On a side note, I would be a bit nervous playing basketball, (the way they play here in NYC, it is definitely a full contact sport), and rollerblading, where the dangers of a fall would be multiplied by my having AS, but to each his own, I guess. Be careful.

As someone else in another thread mentioned, have you considered swimming or some other non-contact sports?

Take Care.

Spenser23@aol.com

My pain has worsened every year. When i was younger and did sports every day i used to get regular back and sacrum/pelvis injuries(obviously i was unaware of what i had). Now i am at a point where after a sport (such as badminton, basketball or rollerblading) i come home in so much pain that i must immediately take strong pain killers and basically i lose sleep for the entire night.

Also in general, my pain is at its worst at about 4 am. This is a type of pain that comes with having been immobile for several hours. This pain has never improved with exercise and in fact has worsened throughout the years.

I will continue to do sports and stretching for many years to come but more in the hope to slow and prevent complete fusion of the spine.

take care
michel

Of course, you never know how much greater the pain might be if you did NOT exercise.

It's tough to contemplate, but maybe this IS a lesser degree of pain, thanks to exercise.

Just a thought.

Spenser23@aol.com

The diet is advocated by a rheumatologist in England (Dr. Ebringer, since retired) based on some background science, and on the diets observed effect on patients from his practice.

The background science is that it is believed that AS is triggered by a bacteria which has cell surface molecules that closely resemble other moleules in our bodies. These cell surface molecules get attacked by our immune system which then remembers their shape and so starts to attack similarly shaped molecules in our bodies, thereby causing AS.

Those ideas are not so controversial, however, Ebringer extended them by noting that a good candidate bacteria was Klebsiella, and that Klebsiella occurs mostly in the gut. The gut is also close to the lower back and SI joints, and so a continual immune reaction in the gut might somehow be transfered to those areas.

This hypothesis motivates the diet since apparently Klebsiella feeds on starch and so if starch levels are reduced in the diet then the Klebsiella levels will also be, leading ultimately to reduced AS activity.

Dr. Ebringer published these ideas in a few areas, but nothing peer-reviewed (which is how an idea gets accepted).

Most rheumatologists do not believe in the diet, and I think the reason is that if the AS were due to a bacterial infection, then AS would respond to antibiotics. Antibiotics could basically remove all of the bacteria from the system. Apparently there is no AS response antibiotics.

So, although bacteria or viruses may trigger AS (and probably do), there is no evidence that after the initial event they play a role. Once the immune system has been triggered, the body takes it from there.

Personally, I'd like to see some more research done on the diet, if only in that the idea has taken hold among enough AS-sufferers. If a little money was spent to get scientifically defendable results and so settle the issue I think that that would be a good thing.

If someone wants to believe in something to help them deal with AS, and if by believing in that thing they get get relief then of course that's also a good thing. However, there are of course alot of things that we can believe in, and the problem with the diet is that, at the moment, it is presented as science when it's not. Someone might think that based on the science, the approach is as worth trying as a proven method (ex: anti-tnf drug), and so try the diet instead of proven treatment.