Yep, I think (and hope) that one day we will have our answers. It's just that most of our answers will be different.
Reading your post, I am not sure about what you are saying. Were you Dx w/ RMSP when you were 5? Or, as you said above, were you diagnosed for the same thing for which you were treated, namely, an unknown infection?
Your experience seems similar to the one I had in 1972. I definitely got VERY sick 1 week after my Dad removed a hugely engorged tick from under my very long and thick hair. No one, including the Dr seemed to consider the possibility of a TBI when I got very sick 1 week later.
WE only knew about RMSF back then and that's the only thing anyone was concerned about. I remember both my parents freaking out when I came home from work w/ a 104+ fever and a lump on my neck, 1 week after that tick. And they searched me for rashes, of which I had none.
It was not long after that (within a couple weeks) I started w/ the chronic to acute tonsillitis until I got them removed.
So.... look at my history below. Seems pretty obvious to me now. However, way back then, nothing was ever linked to the tick bite.
I propose just a possibility to consider, well, dangit, there are SO many possibilities, however:
Traveler: Perhaps you DID, in fact, contract RMSF, or another infection, from a tick when you were 5. And maybe the abx knocked it out. However, the tick could also very well have been carrying many other bacteria and/or parasites. And LYme could very well have been one of them. So maybe the treatment you received was adequate to knock out the primary infection, but was not adequate enough to get rid of the Lyme.
Just something to think about.
I'm hit and miss here, but am constantly thinking about everyone here -- and how similar, yet unique each person and case are. I will strive to find my answers and I will share anything/everything I learn here. However, we are all so unique, there will be NO way to apply everything I learn to everybody.
All we can hope for are more answers. I am very pleased and excited that I will be seeing an Infectious Disease Dr who is covered by my insurance and who helps those w/ Lyme. And even more pleased that he is doing research on all of these 'connections'. He probably does not have 'THE ANSWER'. But I bet he's got a bunch. (of answers)
And Traveler, the more I think about it, the more I think about the possibility (or probability?) that abx knocked out at least one of your TBIs, but that you had more than 1, and that 1 became chronic because the abx was not adequate and neither was your immune system. (sorry, not trying to knock your immune system...)