Saturday, August 18, 2012

Some background

I developed cfs/me/dysautonomia suddenly at the end of 2006 after serious complications following the birth of my daughter. Prior to this I had it all: great job, extremely active -in fact any hobby I enjoyed had to do with being active. An avid biker, snowboarder, yogi, hiker, etc...I loved doing anything active. Falling ill (and not getting better) was not on my radar. My family and I struggled through the first few years unable to comprehend that I was not getting better. How did this happen? How could we fix it? Would my child ever know me as anything but sick?

Countless doctors (and unfortunately many friends and some family) wrote me off as having anxiety, nothing more. Finally I diagnosed myself as having dysautonomia and found a neurologist specializing in this. Eventually I came to the conclusion that I also fell under the dreaded cfs umbrella and saw Dr. Nancy Klimas. Under care of my neurologist I have been receiving ivig every 4 weeks for almost two years. Although not a cure by any means it has helped me. I believe that it has worked in its intended method; that is, it has helped the autonomic neuropathy. Which has helped blood pooling, orthoststic intolerance, gi issues.  It may help the fatigue slightly but it does nothing for PEM.

About a year ago we decided to give Ampligen a try but there was a problem with this idea. One doctor had put me on steroids a few years ago for a short taper and I have been unable to get off them. They are a horrible drug and the bane of my existence. Hemispherix required that I be off the steroids in order to take part of the clinical trial of ampligen. As I worked on that aspect, the Norwegian rituxan study was published. My family and I consulted several specialists and did not take this decision lightly. In the end, with the support of several of my doctors, we decided to give Rituxan a go. And here we are....


At October 2, 2012 at 4:38 AM , Anonymous Anonymous said...

I have ME as well and I am worried about the genetic implications since i want children. Is your daughter healthy? Good luck with Rituxan many of us are cheering on and hoping for success!


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