Hi Carolyn, I'm not on the Cheney protocol and have lost track of what that is right now. He's a great doctor and we have had dealings in the past. It was good to catch up with him and hear his lecture at the Invest in ME conference a couple of years ago.
I've been taking the MAF314 which is being made by another patient in my area. The starter is from Dr Santos.
My experience is been that I can tolerate MAF314 and obtain benefits from it. At the same time I am also taking Valtrex and Immunovir. In the UK we don't have many doctors to support or help us. I've cobbled together these things from the little testing I've had and input from some private doctors. I've not had access to any formal medical help for a while now.
The biggest improvement I have made on the MAF314 is a reduction in viral symptoms, less infections and a noticeable increase in my ability to exercise a little without crippling PEM after. That said I have no had a consistent supply of MAF314 and when I stop taking it I revert back to baseline and get severe symptoms back again. No way of telling if this would improve with a regular supply. I also suspect that over time the good effects are reaching a plateau. If this is a plateau then I am no where near a cure and my ability to exercise is still minimal.
It's unusual for me to respond well to drugs or treatment so I am not knocking my response. If I had a doctor who understood what is happening we might be able to tweak it somehow.
