I have been off valcyte for over a week now, again. It just makes me feel like crap as well as really depressed. I have only done 2 short courses of a few weeks of valcyte, its hard to really confirm if its helping but i think i do feel better after using valcyte then before i used it, very subtle improvement. But im going to put it on the back burner for awhile and talk more about it with my doc. Still using famvir though and will continue for awhile longer.
I have started a few treatments altogether that have helped me in the past, cycloferon and very low doses of pregnenolone.
Cyclo has helped me in the past improve my nk function.
I have tested low in adrenal hormones dhea and cortisol, pregnenolone can help with cortisol and other hormones. Pregnenolone has helped me with inflammation and energy in the past but greatly over stimulated me way too much even with low doses. I think i have overcome my problems with preg by slowly upping my dhea first and in very small amounts. Im now at 20mg a day of oral dhea, preg i use a transdremal cream which is 100mg per ml and i only just dab my finger in the jar which i estimate is 5mg or less per dose, but i can feel it helping.
Symptom wise i feel like i have been hanging on by the skin of my teeth to working fulltime, but the last 6 months i have had to overcome chronic sinus issue and then the valcyte really knocked me. I have just come off 3 weeks holidays and survived my first week back at work ok which is a change. Its hard to tell with these new changes in my treatments if its helping me or its stopping the valcyte, but feeling abit better i will take. Its really hard to judge any sort of progress as cfs is so up and down. I think we really need to give it 3-6 months and turn around and see where we are at, if i do that for the last 6 months it doesnt look good. I will blame the sinuses for most of that.
This year is my decade year with cfs/me. i think the antivirals have kept me able to keep working but overall i cant say that some symptoms are worse or better. I think the longer i have cfs the more my symptoms have changed more then anything. That real foggy brain was very yuk the first few years, now i still have it and it doesnt seem as bad but then again sometimes i think we sort of get use to living with it, but the fogg has its moments where it is unbearable. One thing i definately know is worse is my memory, especially names even people i have know for quite awhile but maybe dont cross paths as often as others. The other memory problems i have is shortly after being told something, its in one ear and out the other, unless im really concentrating. SO having to concentrate for long periods can destroy me. I also think i get through work as it can be adrenaline charged for short periods and then after that the memory/brain fog kick in strong, the lights are on but know one is home type thing. I use to be able to do some exercise, mainly weight training and recover ok, but have never really been able to do any type of cardio where breathing and heart rate increase for long periods since having cfs, even though i was quite fit prior. I have attempted a few very short light weight sessions and expect to feel stiff the next few days but not only do i get stiff, the PEM really knocks me, almost like i have no recovery ability. Sleep is now just about non existant but is managed ok with meds but do go through some bumpy periods with sleep. My medication dosages havent changed since almost the start of my cfs.
Overall, if i can just bum around the house, watch some tv and internet time, lie down every so often to rest(once i could nap, now i never nap or cant) my symptoms are very tolerable, although boredom kicks in. Its a strange feeling to have no energy but be able to rest but feel completely bored out of my brains, only another cfser would understand. But when im active i feel like crap, i come home from work, my head pounds. At the end of the working week the first day im definately a zombie, hopefully after that the next couple of days im just dealing with boredom. When things around the house need to be done like mowing the lawn, which usually gets to a good height after continually putting it off, this will knock the stuffing out of me. Even visiting people for long periods does me in has its tiring having to try and be social, so this is avoided alot. SO my days off are planned on recovering and being bored so i can go back to work and be beaten up, sort of like the movie ground hog day, lol.
So thats my little catch up wth where i am at. On dr lerners energy index score i think my days vary between a 2 and a 7, very ocassionally an 8, but averaging a 5-6. Hows that for rating my cfs, clear as mud!!
http://www.treatmentcenterforcfs.com/energy_index_score/index.html
I think there are other poor buggers alot worse then me and others functioning better, some function at a consistant level and others like me are up and down like a yoyo. Maybe the people who are still working, function more like yoyo's. If i was a millionaire and didnt have to work i would be consistantly rating higher. So i feel sorry for the poor buggers who cant work and are rating at the lower end.
I hope everyone starts to feel better soon. Come on Norway!!
cheers!!!