Never been an Adult w/o ME/CFS.

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 I became sick with a severe respiratory illness during the fall of 1989. It was my junior year of high school and I was on the swim team. I spent most of that swimming season horribly sick and tired, many of my teammates and coaches didn't understand what was going on and continued to push me to perform despite my obvious fatigue.  I was bullied by many of the off-season football players, likely due to teenage competitive spirit and overall misunderstanding of the situation. It likely didn't help that I matured late in life, so was seen as a ready target for these athletes. 

For the first few years after the sickness, I had no idea what was going on. Was diagnosed with "post viral fatigue syndrome" which started the path to my ME/CFS diagnosis. So many doctors of various specialties trying to determine what was going on without success. I do not recall when I was officially labeled with the ME/CFS diagnosis.

Spent most of my early 20s attempting to perform in college as is the norm for most aspiring intellectuals. I found however that concentration and getting to class was very difficult due to my disease. It took me 11 years to get three associates degrees, I was never able to complete a full Bachelors as the upper-level classes were just too difficult for my mentation.

About seven years ago my baseline level started to deteriorate. I ended up needing to find a way to work at my job as a registered nurse, as I was having difficulty keeping up the pace of the position. This was when I contacted an Internist and was able to convince him to use the Montoya Valcyte regimen from the preliminary study. This worked for about a year and a half very well, allowing me to become 80 to 90% what I consider normal adult levels of activity. 

When my baseline started to deteriorate again, I went back to the same Internist and was able to convince him to redo the Valcyte treatment. I also convinced him that instead of six months of treatment, to continue for two whole years. This returned me to a level near what I had been after the first treatment. I would consider the level to have reached 75 to 85% of adult norm. 

During this period (after the two-year treatment) I decided to start completely over to try and determine what was actually wrong with me. I went to multiple infectious disease specialists and one of them gave me several unusual blood tests. One that came back positive. It appears that I have antibodies for Coccidioides, which likely indicates that my initial infection was Valley Fever. This disease is noted for its high level of fatigue. It also has a small chance of long term, chronic disease.

My current status, is a slow decline of my baseline yet again after that two year treatment. I find that I'm not willing to undergo the Valcyte treatment again, as it's horrifically expensive and doesn't seem to provide any lasting relief for my symptoms. It also appears to be less effective this time around for some reason.  Currently trying to see a pulmonologist due to increasing symptoms with my respiratory system. I'm hoping the Pulmonologist I've chosen can help.