Hi M. Sorry you are having so much anguish. I too was totally disabled by AS, but have done the research and managed to put my disease in remission. I won't go into all my detail here, but will be happy to do so if you ask. Suffice it to say I was bedridden for a full year, with all of the lower vertebra in my spine fused together. I have now been off all medication for 8 full years (pain meds, biologicals, NSAIDS, etc.), and skateboard every day at age 54.
I found that arthritis for me was nothing more than the most prominent manifestation of system-wide inflammation due to poor diet. We literally dig our graves with out teeth. I began understanding what true healthy diet was, stayed with the diet religiously for a full year (but I saw positive results almost immediately), and began tapering off the meds as I felt better. I too am HLA B27 positive, but all my disease indicators are now back to normal (actually better than "normal" [wink] .
If you can't pick it and eat it raw, isn't food. Bad food triggers inflammation in the intestines, with soon spreads throughout the body, which accounts for all the other symptoms AS sufferers get like low thyroid, insulin intolerance, etc. I eliminated ALL starches from my diet, even supplements and aspirin due to the corn starch they use as a binding agent, and stayed strictly with meats, cheeses, green veggies, nuts and low sugar fruits. I have learned alot since then. I added more foods back to my diet after all of my food allergies settled down, which is really what most diseases are.
You will need to become a health expert, and I'd suggest following an holistic guru that truly know how to heal.
Here is my diet:
1. Gluten-free foods (no wheat, flour, barely or rye...creates gut inflammation and bleeding).
2. Low lectin foods (leaky gut allows lectins entry into the body, which attach to the cell wall sugar molecules in every tissue in the body, which triggers the immune system and causes inflammation).
3. Low sugar/glycemic foods (sugar is highly acidic, and is like throwing gas on the fire where there is inflammation).
4. Balance acidic with alkaline foods (acids like meats and sugars are free radicals, which strip the cells of it's electrons causing tissue damage.It also forces the body to neutralize these acids by buffering them with minerals like calcium, which leads to soft bones).
5. Avoid all processed oils, which become rancid very quickly and turn into free radicals. I only use cold pressed virgin coconut oil.
6. Studies show that at least 50% of your diet needs to be consumed raw, otherwise your body goes into a state of leukocytosis (body does not recognize cooked food, and treats it like an infection by triggering the immune system.).
7. 30% of your oils need to be omega 3 fats (flax seed, fatty fish, ect.).
I personally eat 33% carbs, 33% protein & 33% fats using the above guidelines. My typical daily diet includes one can of sardines, tall blender of veggie smoothie with pea protein powder & fish collagen powder), one avocado, two eggs, cauliflower rice mixed with sea salt and coconut oil), tablespoon of almond butter and real honey (much honey is fake, so I use certified organic made in the US), cup of berries, and one sweet potato or yam (always go organic...boil cubes, drain add coconut oil & sea salt, then mash with a glass cup), beef patty three times per week), and chicken three times per week. I began adding legumes after I healed, but they need to be prepared correctly to neutralize the lectins (boil them for ten full minute).
Of worthy not is the Okinawan diet, the longest living population where the average 99-year-old is still fully mobile (and fertile!) and continues to harvest the fields. They mainstay of their diet (70%) is sweet potato, which interestingly is the only low lectin starch. Rest of their diet is 2% oils, 6% meats/fish, 10% rice, and some veggies.
Hope to hear from you.
Bobbie