Hello, just thought that I would update this thread with how I am doing. I am still doing fine. I had one of the best summers I ever had in terms of physical exertion and activity. As I got busier with physical work in the fall I have been able to work decent hours each day. I am feeling fine, I am feeling good I am feeling lucky, in some ways.
I am still on the Valcyte and LDN, I read about what sickofcfs is taking and decided to add Valtrex too. Not much of it but some.
The only concerning thing that happened recently was in late summer when I was being physically active on a daily basis, at one point it seemed that I was coming down with something but it wasn't the feeling of just falling sick, it was the all too familiar feeling of being hit with something more, something EBV/CFS related. When I recognised those symptoms, I immediately dropped everything i was doing and started to take all the AVs, ARVs and supplements that I had at higher doses. I made sure I hit it hard and fast. I think it worked, the CFS symptoms that started was kind of vague-ish and did not last long. I recovered without it dragging out very long.
All in all, with some bumps and dips along the way, my recovery has been up. The amount of supplements that I take daily has been dramatically reduced, less of them seem to work more. I am on a simple OTC thyroid glandular supplement for energy and that works well. It's been a long time since I have experienced the slow burning grind that I associate with my CFS so much, an illness that just seems to go on forever and ever without ending.
I may not be able to get off the meds, but I am living a life so yea I feel 'lucky'. When it comes to CFS, I find that even simple things help alot. When I am under alot of stress, I stop eating foods with wheat or lectins. I generally have a low carb diet, low on refined sugars and hi in protein. I find this very helpful. Besides being careful about this I generally find that I do not have to be much more cautious in the things that I have to watch out for.