Do you take any amino-acid supplements?
So far on my health journey, I think the darn things can solve a rainy day. But I have no idea why. (Albeit I can't imagine them solving anything as serious as what you have - but since antibiotics have failed...maybe worth a shot?) Usually, when I have a problem that won't resolve, I haven't found the right amino or amino combo. It's pretty crazy. I can't explain why I just wouldn't have plenty of aminos on tap from the food I eat or why they would work within minutes of taking them. I've been looking for the science behind it for a long time but nothing satisfactory that rang true to me yet.
I would think I was the only person in the world even taking amino acids, I mean, no one should really have to take them at all theoretically but on the forum here at PR, loads of people take them and know all about them. I think there has to be some statistical significance to that. At the doctors office last I had to explain to the nurse what an amino acid was and how to spell 'Glutamine and Tyrosine' and I've been on some other health forums for my other medical stuff and they never mention amino acids.
I was wondering though what L-Tryptophan might do for you. That's kinda a shot in the dark but I guess it's lighting up some part of my brain. I used to have a photographic memory for science and anything I read and worked as a tech / taught college. Now I feel kinda feeble though but figure locked away is probably a lot of information. ;-P
If I owned a lab I think I would like to see what a spinal tap revealed, and do an Orthostatic Test and I've read on this forum about some kind of neck spinal issue that can cause an incredible number of very serious issues detected by an upright MRI. Really interesting stuff, maybe someone who knows more about that can chime in. But yeah, I really hope you get answers because that sounds not only super hard to live with but really scary.
Speaking of truly awful doctors -- I had Influenza B a couple of weeks ago -- and a really bad form bred up from the hospital where I caught it -- and the doctor I saw on call told me it was allergies!
Haha -- To be fair though, earlier she had told a mother of a toddler with a high fever and a body-wide rash that the baby was fine it just needed to drink more water and it had....allergies! That doctor is going to kill someone. Gotta love Google reviews, I got to read all her 1 star ratings - which she only had 1 star ratings. ;-P The mother took the baby to a different hospital and was admitted, so she's okay thankfully. I can't believe someone would blow off a toddler with a rash and fever. I can see someone shucking off taking care of me, I'm not small and cute. ;-P But a toddler...seriously....
((hugs)) Hope you're feeling better today!