Being incorrigibly nosey, I have just looked at your profile: Do you keep goats? And if so, what sort? If so, you must definitely write to my husband, since this is one of his desires when he retires.
He would also be very pleased to here of someone with primary progressive disease who is benefiting from the regime. You ask "How many of us are there?" I don't know, but I guess there are more than you at first think. My first thought, as a cool, reserved and to some people slightly aloof English person, was to just get better and get on with my life, but I would have felt guilty doing that, so I have ended up talking more about myself than I ever have done before.
As far as the spinal tap goes, I guess that the oligoclonal bands will remain for a while as the endotoxins are gradually removed. I have never had one so don't know what mine would have shown in the first place. Likewise, on an MRI scan, there will very likely always be some scarring from very old damage. I am having another scan sometime next month, after a gap of a year, but I guess there will still be quite a lot of old damage showing, although I feel certain nothing new! I think the main thing is to go by how you feel: if your symptoms are in reverse, then that should continue, but how quickly and completely will depend, say, on how much damage is in your spinal chord. Luckily I had very little. I still can't play my 'cello very well, though, but I was only a learner to start with.
Once you start on intermittent treatment, you can always go back to longer pulses if you feel something coming back.