Hi Sidereal,
That's all really interesting. I value the opinion and experience of anyone suffering from this thing -- no salt needed!
I just finished reading
Blaser's book on the microbiome. It's excellent stuff but also not extremely useful from our perspective: ie, it explains that the dramatic changes to the microbiome from broad spectrum antibiotics can basically last a lifetime, and how various states of dysbiosis are related to certain disease states (this I'm sure everyone with ME already knew).
Unfortunately, it doesn't go into which ways to restore that state work from a scientific perspective. Perhaps, I suspect, because they're still in the process of trying to work that out, or (I think more likely) because there simply aren't any answers yet. It also doesn't really deal with the role of dietary changes, but I believe that's something which the Human Microbiome Project is currently looking at (they did show recently that paleo had a big effect and down-regulated inflammatory organisms).
My gut (!) opinion is that doing something as restricted as the paleo/raw/veg/vegan diet is totally unnatural (I just can't believe that we were somehow 'not meant to eat' large swathes of totally natural foods), but if we got into this mess through consuming unnatural things like antibiotics, vaccines, etc that something just as unnatural might be our only ticket out and I'm increasingly losing resistance to trying it for that reason.
Your hospital stay certainly doesn't sound encouraging. How and where did you manage to arrange the stay and how much (approx) did it end up costing?
I've actually used your logic a lot in this (it's part of the reason I've been thinking that going paleo would be a good idea because there's a strong chance that it would work out better than the treatment options).
I can't remember the amount of times I've read about a disease and realized that, practically speaking, there is no way it would be diagnosed without an index of suspicion that simply doesn't exist in modern ten minute consultations.
Plus, as you mention, there's practically nothing bar infectious diseases that modern medicine seems to be able to actually cure. That's the only area in which I think not being able to diagnose a disease caused by a pathogen which could be effectively targeted would be really tragic from our perspective.