Thank you so much Blue Lyme, all of your words ring true. It's like you've read my mind beyond my initial post 😃
The hardest things to deal with is not so much the symptoms (which is tough enough) but the uncertainty of not knowing what I "have", making it even harder to explain to family, friends and my spouse. The labels often changed depending on what doc I see. The future is still as uncertain for me as it was 8 years ago.
My current docs thinks EBV could be at play, particularly since nothing else had made a dent. I'm on Valtrex and he's also recommended high dose Vitamin C. Looks like there's even less research and studies on Chronic EBV than Lyme. At least I have hope with my current LLMD. All the others have generally given up, perhaps they were too Lyme focussed and didn't see the larger picture perhaps?
I have a Neuro appointment on Tuesday. Interesting to see if they recognise the SPECT scan and look at my brain issues in more depth. Perhaps something else is at play that isn't an infection at all.
Having 2 kids under two I'm worried now more than ever and I don't want their father to end up being a vegetable who can't support them. I'm forgeting names, getting lost, forgetting entire conversations and it feels like the beginning of Alzheimer's at the young age of 33.
Thanks for the reminder to step back and go with my gut. It's probably worth looking at all my medical notes again and trying to connect the dots myself. In various tests through western medicine and other methods, immune system problems tends to be a theme although nothing previous treatments have really focused on.
At least if I found a label for what I have I can at least explain it to other people - even that would help deal with the loneliness of fighting something you don't even understand and only you experience.
Thanks again for the support and kind words