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Loc: Netherlands Rijswijk Den Haag
Ok, here comes my story: It was some 22 years ago that a rheumy said to me that I had Bechterew’s disease or even more frightening “Morbus Bechterew” as he called it, known in English as Ankylosing Spondylitis. I was in a shock, I considered myself an athlete, an avid rower training up to six times a week and just wanting to get a prescription for fysiotherapy for my lower back pain and certainly not wanting to hear that I was chronically ill. Instead of fysiotherapy I had to stop rowing and got a prescription for Surgam an Ibuprofen like NSAID which did help in the beginning. After a year however I took the maximum dose and soon even that didn’t help anymore. The next NSAID was Fenylbutazon or Butazolidine. By taking two or three times 200mg I was able to keep the disease profile pretty low and I was able to have a pretty normal life only at a bit lower pace. In order not to stop my training too abruptly I had started running and a physiotherapist helped to regularly loosen my back an ribcage. Though this all helped me I couldn’t help but notice that in a very gradual manner things were getting worse. About four years ago I realised that something had to change or better I should take thing into my own hands. The death of my father also around that time made me realise that doctors not always have time and means to do the best for one individual patient in a certain situation. Everyone has his own responsibilities too, especially when educated enough to sort things out. So I started searching first in medical databases and later further on the internet and discovered kick as (thanks to the also Dutch Arjan by the way). The more I read the more excited I became: there really was research that was not practiced in the medical world but that do was easy to follow and about which a lot of people were very enthusiastic. So I read about the whole site (not true) ordered the Carol Sinclair book and then started well prepared with the diet. I cannot say anything else then that the first two weeks were the best I ever had spoken AS-wise. I remember sitting in my bed one morning and using my whole ribcage for breathing for the first time in years. My physiotherapist was pretty flabbergasted and said “whatever you’re doing at the moment please go on with it”. My chest expansion which had gone down through the years to 3 cm doubled to 7 cm and my position became so much more upright that I had to adjust the mirror in my car several times in one week. If I had gone on turning back the clock I would now be symptom free but of course there was an endpoint: those things that really got fused stayed fused and especially the neck area was and stays troublesome for me. So after those first months progression stopped and since that time I have my good and my bad times but the baseline stays better then my starting point and my quality of life is pretty good, good enough for an active life and even to run and train for a half marathon once a year. I have not succeeded in stopping my medicines. I did some attempts but maybe the damage from 22 years of AS is just too big so I still use fenylbutazon be it in a reduced dose compared to earlier in my disease.
Like most of us here I believe that the origin of our disease lies in the gut, it’s condition and it’s bacterial flora. Above that I believe that many of the short time effects can also be explained as the result of changes in metabolism caused by eating starches and sugar which fuel our immune system causing pain within hours of eating the starches. Therefore it is useful to train our metabolism to be more economic and to use fats instead of overloading our system with easy energy foods. The apple fast is very useful for that and it is a good clean up of course. I hope in the future to learn and experiment a little further and to be able tone down my disease enough to be able to stop NSAID’s altogether. Thanks everyone for all the input here, the experienced and the new people here altogether and especially John, Bilko, Tim, Ted, Arjan, PattyG, JanandthePmirabilisthing, Codias, Zark, Pello, Evelyn and even more especially the one that expects his name here but doesn’t see it. Gerard