3 ms·

Now I see that you're OP and looking through the comments, I just want to say I feel for you. I am 26, when I was in high school I was highly active with a lot

by wpasc 8y ago

Now I see that you're OP and looking through the comments, I just want to say I feel for you. I am 26, when I was in high school I was highly active with a lot of exercise. Due to the peripheral manifestations of my AS I can't really exercise much any more without inflaming my arm or my knee. I think some other posters here raise great points about diet and exercise (There's been a lot of talk about starch and AS, see kickas.org, google Specific-carbohydrate diet, look up the work of dr. Alan Ebringer from King's college london). Also, you may find articles by Dr. James T Rosenbaum interesting: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3204318/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3204318/ . I'm not a doctor but experimenting with diet and trying to be good to your gut I have found to be helpful. I have a whole bunch more thoughts on our disease, but I just want to say it can be rough, I'm sorry you're going through this, and you are not alone friend.

rorykoehler 8y ago
Thanks for you kind words and support. I'm sorry you have to share this experience too. I know there are many people suffering all sorts of ailments, many much much worse than AS which I remind myself of when I'm down. That said I don't need to tell you how frustrating this can be. The hope of a cure sustains my generally positive outlook on life. I hope for all of us that we make massive leaps in understanding our immune system and genetic makeup better in the coming years. I have been following all the research and advice you mention. I'm absolutely positive that we are only scratching the surface (Dr Ebringer etc). It seems that the link between klebsiella and AS may be on the right path but not a totally accurate diagnosis. Based on sequencing my own biome (i used Viome) and some reading I have done it is more probable that there are a whole host of bacteria that interplay to create an inflammatory reaction. I'm almost certain based on some papers I've read that there is also a corruption in the stem cells that create the immune system white blood cells themselves which would render autologous transfusions useless. This is both exciting and daunting considering the risks of side effects like graft-versus-host disease which sounds truly terrifying. This is why I'm so apprehensive to go for experimental treatment. Life can suck during a flare-up (which I've managed to dampen with diet) but overall it could definitely get and stay worse. Hearing anecdotal evidence of people essentially being in full remission on the other hand has piqued my interest. It truly is a catch-22. I would be curious to hear more about your thoughts on AS.

by wpasc 8y ago

rorykoehler 8y ago

Thanks for you kind words and support. I'm sorry you have to share this experience too. I know there are many people suffering all sorts of ailments, many much much worse than AS which I remind myself of when I'm down. That said I don't need to tell you how frustrating this can be. The hope of a cure sustains my generally positive outlook on life. I hope for all of us that we make massive leaps in understanding our immune system and genetic makeup better in the coming years. I have been following all the research and advice you mention. I'm absolutely positive that we are only scratching the surface (Dr Ebringer etc). It seems that the link between klebsiella and AS may be on the right path but not a totally accurate diagnosis. Based on sequencing my own biome (i used Viome) and some reading I have done it is more probable that there are a whole host of bacteria that interplay to create an inflammatory reaction. I'm almost certain based on some papers I've read that there is also a corruption in the stem cells that create the immune system white blood cells themselves which would render autologous transfusions useless. This is both exciting and daunting considering the risks of side effects like graft-versus-host disease which sounds truly terrifying. This is why I'm so apprehensive to go for experimental treatment. Life can suck during a flare-up (which I've managed to dampen with diet) but overall it could definitely get and stay worse. Hearing anecdotal evidence of people essentially being in full remission on the other hand has piqued my interest. It truly is a catch-22. I would be curious to hear more about your thoughts on AS.