Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Potential "Patch" for AS

Thanks for checking in. My AS remains relatively under control using the methodologies I've discussed. However, my IBD (which got much worse from a more IBS-like state after I had traveled to Mexico and got an infection) continues to progressively get worse. I don't have much back pain (which was really bad when it was occurring due to bacterial reactions) at all anymore. I eliminated the particular bacteria I was reacting to, which my immune system formed a kind of memory of, in my purging/antibiotic runs. If I reintroduce bacteria through eating things like kimchi or taking probiotics, the AS pain begins to return. Therefore, that particular aspect is very well managed right now. I am now working on how to deal with the remaining issues. However, they are very similar in nature...I believe they are just harder to bypass because a much larger variety of bacterial antigens causes the inflammatory response in IBD.

To all of the people who have followed this post series or that are reading it for the first time, I have basically found confirmation that my theories about immune memory are correct an that they generalize well to other autoimmune diseases. The exact methodology I've suggested (increasing T-regs and decreasing T-memory) was actually tested in an IBD setting and it worked. Here is the link to that article and study (Article, Study). I have personally emailed the researcher that spearheaded that work and actually got a response! He told me that they were trying to develop a company based on these principles in order to treat autoimmune issues...but that it would take a while in order to get past all of the regulations and other red tap.

Interesting. Do you currently take any supplements? What's your diet like?

Hey there, long time since I came here to check my post. Sorry for my late reply. I have been experimenting with many supplements. I seem to manage fine without most of them. The ones that have the greatest impact are ones that reduce inflammation, and more recently, support my immune system with vit D. I have been trying high doses of vitamin D and that has drastically reduced my intestinal discomfort. I did some reading and vitamin D receptors are in practically every cell of our body. This vitamin D pathway seems to inhibit signaling of a very specific set of pathways (EGFR). I never noticed this effect with modest vitamin D supplementation, however, with larger doses (about 2-4 x the standard dose, using calcifediol @ 2x suggested dose [which is 3x more absorbable than regular cholecalciferol] from d.Velop + cholecalciferol drops with K2 @ 2x suggested dose, which equates to approximately 25000 IU of Vit D) I have noticed immediate pain relief in my intestines. It wanes as time passes nearer the next dose (around 18 hours) but is restored upon dosing again. I noticed significant mood elevation as well. I even found others noting the same thing online (this is usually more noticeable in people with very low levels).

I would also like to note to everyone that I have found confirmation that my theory about AS being driven by a subset of T-cell immunity that we need to delete in order to be "cured" was correct. A lot of people doubted my ideas as being pure speculation, but I had mentioned so many studies that pointed to this being the case, as well as demonstrated mechanisms of action (by infection then disease progression being the case for 90+% of patients, etc). Here is the paper that demonstrates a new treatment that eliminates a subset of T-cells that were found to be elevated in AS patients' blood and synovial fluid. You can read the study here. I think we are not far off from a functional "cure", as this treatment doesn't truly address the true fundamental underlying cause (why are we forming these T-cells to begin with, and after removal, why do they come back without constant use of the monoclonal antibody? It is likely related to HLA-B27 and other genetic variants that cause novel interactions,) however, it is a good enough solution to provide remission that requires treatment only 3-4x per year. I think anyone would be happy to fully regain their life back or at least stop progression where they are at with this treatment. Methinks that with normal cellular signaling returning, over long periods of time, bone remodeling will occur and reduce issues in patients that had moderate and mild forms of disease that haven't fully fused all the way through their spines/necks, too.