I've debated about whether to post or not, because I'm not quite where I really want to be, yet. But, I can unequivocally say that the diet does make a difference. Until yesterday, I have not been on medication (except for an occassional naproxen) for the past year, and if I had not been attempting the diet, I know that I would have been a mess -- with difficulty walking, bouts of iritis, etc.
I think my AS was triggered by a bout of salmonella food poisoning between my pregnancies -- so about 15 years ago. I say that because, in retrospect, I realize that I was beginning to have symptoms in my SI/hip area when I was pregnant with my daughter who will be 13 this month. My symptoms were intermittent for a long time --until about two years ago when I had my first of several bouts of iritis in a 6 month period, was having constant arrhythmia (which seems to go hand in hand with inflammation for me), was having excruciating pain in my SI/hip area, and was beginning to have more pain in my lumbar area as well. Since that bad year, I realize that the disease is no longer intermittent, and it effects all areas of my spine (although not usually all at once), and various peripheral joints (sometimes my toes, sometimes my heel and ankle, etc.) I know that because I have problems in those places whenever I get sloppy with the diet.
Soooooo, finally, after years of going to the doctor for horrible hip pain that occurred now and then, and beging treated as if it was a one time situation; and after wondering ALOUD several times to my doctor if I might have something related to my brother's reactive arthritis (a related spondylarthropathy), I was diagnosed with AS in March 2004. Then all the puzzle pieces fit together -- my two maternal uncles (and even a great uncle that I don't remember) with the stereotypical AS posture.
I found KickAS in July or Aug. 2004, and started the diet in Sept. So it's been a little over a year. After several months on the diet, I began to feel terrific -- except for being on a long course of topical treatment for the chronic iritis, I wasn't on any medication, and wasn't having any arthritic symptoms at all. I felt so great, that I began to cheat on the diet. And at first, nothing happened. But eventually, by early summer, I was in a full-fledged flare. I've been working on the diet since, and haven't quite gotten back to that wonderful, completely pain free state. It feels as if I have a low level of inflammation going on a lot of the time.
I've finally decided to combine the diet with sulfasalazine which has an antibiotic effect. I'm hoping that each will complement the other, and that I'll be able to stay on a low dose of the medication, and perhaps go off of it at some point. I really dislike the idea of being on medications for the rest of my life (I'm 44) -- all of them have side effects. I also feel so angry and frustrated with my rheumatologist. It was no problem to walk into her office yesterday and ask for medication. She gave it to me without blinking an eye. But to ask for a wholistic approach -- one that is healing -- was really not supported by her.
So, even though I am going to try a medication, I still plan to be proactive about the disease. I realize that the medication ALONE will not take care of my symptoms (look on the main forum and you will hear lots of people discussing extreme pain or problems that they are having while taking meds at the same time), and I'm hoping that its antibiotic effect will help control or get rid of the remnants of kleb that aren't being annihilated by diet alone.
The diet makes a difference. I'd be in a wheelchair or be using a cane right now if it didn't.
Meanwhile I live and move and I am glad, enjoy this life and all its interweaving. Each given day, as I take up the thread, let love suggest my mode,my mood of living. (Fred Kaan, 1975)