About my Illness.

Since I refer to it now and again I figured I would put up a short blog about my illness in case anyone was wondering.  I most likely have chronic Mononucleosis, which basically is a viral infection that my body is immune to but for some reason decided to keep fighting.  It's a bit like having the flu all the time or a lot like all the symptoms of CFIDS.  I don't really have CFIDS, but it's close and most doctors would classify me as such.  The one difference between me and real CFIDS person is my blood results.  I have inflammation markers in my body that are off the charts (aka C-reactive protein aka CRP of over 20 all the time) and most people with CFIDS have no such obvious blood markers. So in a way I am better off - my blood results say I am actually sick so no one can tell me it's all in my head.

My doctor is currently running all of the autoimmune blood tests again to see if something shows up that hasn't in previous testing, such as lupus, Rhumatoid Arthritis, Lymes etc, we have done them before in previous years but it never hurs to check again just in case.  If nothing shows up he is also sending me to a rhumatologist to see if there is anything he might have missed that an inflammatory specialist can find.

The biggest issue at this point is my high CRP puts me at risk for a lot of nasty things, heart attacks, stroke, cancer... you get the picture.  I was on antivirals for 2 years that lowered the CRP down to 7 or 8 (normal is under 1), but I had to go off them when they started to destroy my liver.

So now I am in management stage, I try to rest and do exactly as my body tells me to do.  Eat when I am hungry, rest when I am tired, and do nothing to cause myself any stress at all, emotionaly, physical, etc (stress can raise CRP levels even higher).  Meanwhile we are trying different anti-inflammatory treatments one at a time to see what helps and running more blood tests to see if he can pinpoint more than - hey this is some kind of nasty virus or autoimmune disease that looks like CFIDS but isn't really...

In short I have some sort of unknown illness that is of autoimmune origin. I just tell everyone that it is CFIDS to make it easier on myself explaining what exactly chronic mono is.  At this stage I actually prefer not to talk about it, most people do not understand very much and it gets old discussing it over and over again.  I am trying to focus my life on what I can do, and rewriting my goals and dreams, not what I am sick with and how it took away my original life, goals and dreams.