Amen to a CURE and not just a treatment. I am personally committed to KICK AS not just for me, but for everyone with AS. I'm working incredibly hard on this angle. I'm not giving up until we kick this thing for good.
Here's my update on the FMT that I did last July:
I did extremely well until October (about 3 good months). I only had a flare once per month during the time of my period. The flares lasted two days. Intense neck/migraine pain and vomiting. Eye pain as well. Then once the flare was over, I felt pretty good. I was able to eat more widely - even more starchy things like sweet potatoes and gluten-free pizza (with rice/tapioca flour only). It was so awesome to finally gain weight!
I made the mistake in October of taking prednisone. My rheumy and a gastro doc did not think prednisone would harm the gut flora. I believe it must have. Right after taking the prednisone, I flared terribly. I spent two months on prednisone and couldn't get off it again. I was miserable. So, back to the drawing board.
I decided to repeat FMT, but did not use antibiotics prior. As you know, the FDA has done a terrible thing to medicine and progress by banning this for everything but C.DIF. This forces sick people to turn to risky homemade solutions (but you MUST test fecal samples through a lab...don't do this without). I repeated the procedure through two ways to hit the immune system (gut lining) from two directions: enema-like treatment and putting the solution in enteric-coated capsules (yuck, I know, but when you're sick, you'll do what it takes...just google on how to make these). The research is now showing enteric-coated FMT pills cures C.DIF just as well as transplant.
It's now 1 week since this treatment, and I'm completely off prednisone again. I talked to a gastro doc about something to heal the gut lining since I thought it might be damaged from the Klebsiella bacteria. Even with good bacteria, if the lining of the large/small intestines are damaged, the autoimmune reaction will still be triggered if stuff is leaking through the cell walls of the gut. He recommended bovine immunoglobulin...a newer product called EnteraGam. This is apparently better than bovine colostrum in gut repair. We will see.
If this doesn't work, my next trial is going to be doing a more systemic antibiotic. This past July, I only used a 5-day antibiotic when I did the FMT with a doctor's assistance. Now that we're on our own (until the FDA can step out of the way of progress), I decided I will ask my rheumatologist to prescribe a newer antibiotic designed to attack the biofilm Klebsiella may be producing (this is a higher level 14 day antibiotic). Then I will repeat the FMT and continue to work on repairing the gut lining.
My other main concern is the inflammatory increase during menstruation. I really don't know much about regulating female hormones. Every doctor I talk to about this doesn't know anything about the link between the gut and hormones...they only admit there IS a link. Of course, they were all quick to recommend birth control pills to see if this helped, but I know those damage gut lining and may destroy flora. I need to do even more research in this area. I feel hormones are a HUGE part of controlling inflammation.
Pep talk of the day: We WILL find a cure, and we WILL put AS in remission. Every one of us is part of the think-tank and part of the solution. There's just a lot more patience needed in finding a cure than just finding band-aide "treatments." We have to keep asking good questions and finding the answers. It's all about asking the right questions. Thanks to everyone for all your feedback on this!
