I spoke too soon about my relapse being over and about Mestinon. I wrote a post on Mestinon last week but took it down. I do think this medication can be helpful for people and that its worth a trial if you have severe OI (orthostatic intolerance). It looks like it was the cause of my near fainting episodes so I have discontinued it.
I'm going to try Midodrine but I need to get a blood pressure cuff first so I can monitor my blood pressure as Midodrine can cause supine hypertension. Since high blood pressure runs prominently on both sides of my family and my blood pressure has been high at times my doctor said to monitor it while trying Midodrine.
I'm still in my relapse. It continues to be severe. It was nice to have a brief break and I think it was due to the Mestinon but my body can't tolerate it so I won't be continuing it.
I have worked everything out with my doctor. We were able to talk through all the problems and difficulties. I feel pleased with how we worked through this and that he took 100% responsibility for what happened. The administrative issues are being addressed and I'm confident they will be resolved. I also feel good in that I was direct about how I felt about what happened. So it's all good.
Now I have to find my way out of this relapse. I'm going to start some probiotics-the same ones that Dr. Cheney uses with his patients (Mutaflor from Germany).
I've been going back and forth between trying two treatments. Either Rituxamab or Stem Cells. After doing a lot of reading about Rituxamab I decided against that because of the potential for lethal side effects. I have an opportunity to try stem cells and have decided to go forward with that depending on the outcome of my SSDI case. I plan on using some of the back pay money for stem cell treatment.
I'm going to follow the protocol that Cheney uses to prepare patients to receive stem cells in the hopes that it will make the treatment successful.
I figure I have nothing to lose at this point by trying this treatment. I'm bedbound over 22 hours per day as it is. It's going on 5 months now and I'm beginning to worry this is my new normal. Sometimes I lay here in bed trying to figure out a word that would describe the profound fatigue that is occurring. I haven't come up with anything yet. Fatigue doesn't even come close to describing it. I have never experienced it at this level before though. I'm trying to let it happen rather than being afraid of it.
I'm going to be getting another brain scan because of the continuing decline of my cognitive abilities. This time it will be read by someone who knows about ME/CFS and hypoperfusion.
I'm occupying myself with watching a series called The Shield. I'm enjoying it. The Wire was also really good if anyone is looking for shows to watch. I have Netflix which is great.
Still no news regarding my XMRV results. I think its going to end up being applicable to a subset of ME/CFS patients but not everyone. I'm no longer researching it nor do I consider it to be THE cause of ME/CFS. I base this on certain facts that I'm not at liberty to share right now but will when I'm able to. I feel a certain responsibility to share this information because I posted info regarding testing (which I have removed from my blog) and posted that I thought this was the answer to ME/CFS. I have the utmost respect for the Whittemore Peterson Institute and will continue to donate to them because I do feel they are our best chance for some answers but XMRV isn't it.
If all goes as planned I will be starting stem cell treatments in mid-May.