So I have good and bad to report. The bold has the meat of it all.
If you ask me what stage you are in CFS, I would say getting better and rehabbing my body.
Brain is great:
My brain is doing AMAZINNNNNG, the good news. I have so many lucid periods where I feel no CFS at all (the overwhelming amount of symptoms all at once) nor my faithful un-wanted companion for the last 8 years, that buzz sound and feeling of swimming in oatmeal in the brain. Good NEWS is the brain is there, is not gone for ever like we are so afraid sometimes (In a way will give details later) I can do a lot now with no brain PEM or PENE. I can even program and think very hard stuff. This has given me a lot of my real personality back, I found myself reading deep stuff and pondering about quantum mechanics for the fun of it.
Now, if you asked me what I did, I have no idea, might be the antiviral finally brought the titters of hh6v down or the rehab paid off.
Rehab for Brain:
When I say rehab, just as the physical aspect I treated the brain as the body and started "exercising" and learning from scratch and I mean from scratch. It's been probably 3 years. I started doing memory exercise, like those where you turn the blocks and guess pairs. After turning like 3 pairs I would get PEM and get hours of crash. It was hell for me since I finished high school at 15years old and college by 19y with a computer software engineering degree (yes I was a genius). Talk about a big shock!!!!!! So I progressed and learn math from scratch I would do 2+2 then 2*3 and so on. I increased every so often and avoided to crash, but when I didn't, I rested during the crashes.
It was hard to balance the brain and the body. Since my bread and butter is my brain, I stopped the body work for a bit and it payed off eventually. Again I don't really know if it was the treatment in general or the rehab.
But hey it is great to be suuuuuuuuuper smart again.
The body rehab:
The last 3 years have been so hard, was the longest relapse and the hardest of them all to recover. Is as if I was stock and nothing would get me out. I had to stop and go with exercise. I would say the beta blocker addition was what got me out of the hole and allowed me to progress SLOOOOOOOWWWWWLY and HORIZONTALLY. Again not sure what happened but I notice after 2 years being stuck in the same level of physical activity (5 min walk tops) I could now go back to stationary bike, do abs in longer sets and today I even did 5min aerobic. Also not much shortness of breath lately.
The bad news:
After 3 years of hard rehab and FUNKING hard work. Yes, I get to curse for emphasis, I have worked so damn hard and had to ride the frustration when I had no change after months and months of trying. My other bouts of CFS, I rehab myself fast and got out of it faster, so this bout was different and frustrating as heck. I couldn't increase at all for years.
Now I am still not able to do what my 75y old relatives can do, and that is a bit disheartening but at least I finally feel progress so will keep trying this way (slowly increase w no symptoms) when tired rest and skip and try to do as much vertical as possible.
The other things in my protocol are the same: I stopped veggies and fruit for a few months.
All the same on supplements and meds. My LDN is on 9mg now. And I do probiotic every now and then ( prescript assist) not too often since I feel it inflames my brain.
I have been reading people that gotten "cured" and the consensus in the same, so I am putting a lot of attention to relaxation, I wouldn't say there is a lot of type A left in me. I make a conscious effort to learn about sympathetic vs non sympathetic and try to shift as often as I can. Focus on Nutrition, treating infections, sleep and stress reduction. Treat all areas at once.
Also working on diet, that one is hard since I get diarrhea if I eat the wrong thing so eating healthy is being tricky for me, will see what I can come up with.
In the mean while I try to eat probiotic foods, bone broth and glutamine maybe? again I can improve in this area but not idea what to do.
UPDATE 1/12/15 Long Post - Rehabilitation
Blog entry posted by lnester7, Dec 1, 2015.