Hi all, I was diagnosed with MDS in 2011, having had several years of feeling progressively more lousy and thinking I had ME. I have also had severe gut problems for 20+ years. Official diagnosis is fibrotic RAEB1, normal cytogenetics.
Initially my hg responded well to vitamin K supplementation (there is a whole thread on this somewhere and the original clinical trial is here
http://www.nature.com/leu/journal/v1.../2401790a.html) but overall my counts are dropping and I recently needed a transfusion - first in 4 years.
I suspect that some subtypes of MDS originate in the gut, driven by dysfunctions in the microbiome and malabsorption of (especially) fat-soluble vitamins. Supplementing helps but doesn't address the root cause, and I believe there are probably nutrients not known to science which are being knocked out by bowel dysfunction, and interactions with microbiota that are as yet unknown.
So I figured that if I can fix the gut problems maybe my immune system will stop going crazy and the bone marrow might fix itself. I want to try a Fecal Microbiota Transplant, which has a very good record for curing gut problems and many patients with autoimmune disorders are going into remission.
Thank you for reading x