It has been quite a while since my last entry. Years and oh so much more...
Update on Valcyte:
I took my last dose on February 11th of 2014 after taking it daily for just over two years. It helped me into a form of remission, but never got me to something resembling "normal" for an adult. Still, it was much better than I had been - POTS was under control and I was able to come off the fludrocortisone.
Have been able to have a semi-active life, working about 60 hours every two weeks and resting heavily in between shifts to prolong my remission. Even was able to walk daily (as exercise) for about ten days at my peak.
Decided to start all over again in trying to find out what may have initiated my ME/CFS. I found a new sympathetic primary physician in a healthcare system that I felt was promising. I asked him to help me "start all over at the beginning". He has been very helpful with this and I've been to see both a rheumatologist and multiple infectious disease specialists, who blew me off. Thankfully, in the process of blowing me off, one of the ID specialists decided to throw some tests my way to try and placate me. One of those tests was the COCCIDIOIDES AB test, which came back positive (doctor didn't bother contacting me to tell me. Had to find out via MyChart).
Seems I have antibodies to a fungus that I was last in the endemic area just before getting sick. NOW WE'RE GETTING SOMEWHERE!! (or so I thought...)
Since then, I've been trying to find someone to help me evaluate this possibility, but everyone sees the "Chronic Fatigue Syndrome" as part of my chart and refuse to see me. I was able to confirm that I have granulomas in my lungs when in the Emergency Department after having a near-syncopal episode during an exam with my Primary.
Not sure where to go, or what to do. Am currently trying to be seen by Mayo Clinic in Rochester MN as they have connections with the Mayo in AZ that does so much work with Valley Fever. Seem to be getting the same "You have CFS. We don't treat that here." run around.
I'll try to add to this blog more often.
If anyone has any ideas on what route to try, I'd really appreciate any suggestions! I live in a St. Paul, MN suburb for traveling purposes/ideas.
Thanks for reading!! :-D
Update on Valcyte:
I took my last dose on February 11th of 2014 after taking it daily for just over two years. It helped me into a form of remission, but never got me to something resembling "normal" for an adult. Still, it was much better than I had been - POTS was under control and I was able to come off the fludrocortisone.
Have been able to have a semi-active life, working about 60 hours every two weeks and resting heavily in between shifts to prolong my remission. Even was able to walk daily (as exercise) for about ten days at my peak.
Decided to start all over again in trying to find out what may have initiated my ME/CFS. I found a new sympathetic primary physician in a healthcare system that I felt was promising. I asked him to help me "start all over at the beginning". He has been very helpful with this and I've been to see both a rheumatologist and multiple infectious disease specialists, who blew me off. Thankfully, in the process of blowing me off, one of the ID specialists decided to throw some tests my way to try and placate me. One of those tests was the COCCIDIOIDES AB test, which came back positive (doctor didn't bother contacting me to tell me. Had to find out via MyChart).
Seems I have antibodies to a fungus that I was last in the endemic area just before getting sick. NOW WE'RE GETTING SOMEWHERE!! (or so I thought...)
Since then, I've been trying to find someone to help me evaluate this possibility, but everyone sees the "Chronic Fatigue Syndrome" as part of my chart and refuse to see me. I was able to confirm that I have granulomas in my lungs when in the Emergency Department after having a near-syncopal episode during an exam with my Primary.
Not sure where to go, or what to do. Am currently trying to be seen by Mayo Clinic in Rochester MN as they have connections with the Mayo in AZ that does so much work with Valley Fever. Seem to be getting the same "You have CFS. We don't treat that here." run around.
I'll try to add to this blog more often.
If anyone has any ideas on what route to try, I'd really appreciate any suggestions! I live in a St. Paul, MN suburb for traveling purposes/ideas.
Thanks for reading!! :-D
