My early signs.
I started to notice some issues in my teen years - mainly stiffness and some hip pain. In my very late teens I had a severe iritis attack (the first of many). The ophthalmologist (Dr Ho) asked about hip or back pain, mentioned that iritis is associated with AS and had me referred to a rheumatologist (Dr McNaught). Then came the gene test, x-rays, salazopyrin, NSAIDs etc. Things were fine for a few years and the NSAIDs kept me mobile and I seemed quite normal.
Yes, I am fairly sure the NSAIDs have permanently damaged my health. I started to have weird reaction after about 5 to 7 years of using them. Sorry my memory is less than perfect, which is why I don't give more precise dates. Anyway, the longer I used the medication the less effective it became, and yet the side effects gradually continued to get worse and worse. Eventually I reached a tipping point where I just couldn't tolerate the side effects anymore and had to look for other alternatives.
It was my mother who mentioned people on some internet forum (kickas.org) and they were using diet to manage symptoms. I would have been between the ages of about 17 to 19 at that time and I "knew" for certain they were fools, after all how could diet have anything to do with it .. right?. Well, I could have saved myself a lot of trouble if I hadn't been so arrogant (the saying "pride goes before a fall" comes to mind). Well, that youthful arrogance has cost me a great deal. I find it curious that although it was my mother that mentioned this website where people use diet, years later when I started to actually follow the diet she became very upset and even cried. Later my family could see the obvious improvements in my condition, even my sister who is a medical doctor said to me "the medical system has failed you" (because dietary changes had worked where drugs had failed). I was in so much pain at that time in my life that I even considered the fact that ending my life would be preferable to what life had in stall for me. Years of suffering that would only get worse and worse, and still worse, and eventually my body would become completely rigid such that I would need to be confined to a bed or a wheelchair. Surprisingly it wasn't the pain that caused the greatest despair, rather it was the loss of all hope..
The first clue - antibiotics.
Bear with me on this one, it will become relevant later on! In my mid 20's I was preparing for a trip to Malaysia and Singapore. I visited my local doctor in Kingsford and asked if there were any vaccinations that I would require before going. She recommended two vaccinations: one, an attenuated Typhoid vaccination, the other a Hep A or B vaccine (I forget which). Well, the attenuated vaccine I would later learn contains a live but weakened version of the Typhoid pathogen. A normal immune system probably would have had no trouble with it, however I came down with a cough within days of taking the vaccine. Being irresponsible and not realising it was anything more than a little bit of flu I went to Malaysia - despite the cough. However the cough didn't go away and continued to get worse and worse. Soon I started to develop a mild fever and a feeling of tiredness, then later came the red spots on my chest which are a classic sign of Typhoid. My friends took me to see a doctor and he prescribed an antibiotic and some cough syrup.
Now here is the interesting thing - not only did the antibiotic stop the cough for the duration of the treatment, but my inflammation went away altogether! Now, as soon as the antibiotic course was ended I found my inflammation came right back. Dangnammit. Such a strange thing to happen, and why did the antibiotic have this effect? Well, I find it does fit well with the "Molecular Mimicry" theory I read on kickas.org. Oh and not only did the inflammation return but so did my cough unfortunately, that problem took many months to resolve.
Typhoid is a tough little critter, but not nearly as tough as whatever bug must be contributing to our AS. Whatever it is, the microbe is everywhere and going by research performed on rodents, it appears to live in them too. There is a rodent model for AS by the way, and sterile rodents do not show symptoms of inflammation until they are allowed to interact with normal rodents, ie. exposure to normal microbial flora brings on inflammation. Klebsiella have the same or similar antigens on their cell surface as do those with the HLAB27 gene, and according to the "Molecular Mimicry" theory of autoimmune disease it is this similarity that causes the immune system to become confused and start attacking you in error. The curious thing about the rodent model is that they need to insert the HLAB27 gene around a thousand times or so in order to get a decent inflammatory response. A single copy of the gene and inflammation from any cross-reaction with microbes such as Klebsiella is obviously easily modulated by a normal health body, which indicates to me that something more than molecular mimicry is going on. Some other system has failed also, and the question is what?.
When I returned home from my trip I explained to my doctor what happened. Fortunately my doctor at the time trusted me, and allowed me to try the antibiotic again. Unfortunately it didn't do a thing the second time round. The critter had adapted.