I just wanted to send love your way! I’m so overwhelmed with emotion when I listen to your description of the medical care you’re experiencing. I also relate to your description of your ‘existence’. Did I ever used to ‘have it going on’! It’s insane and illogical to be so diff now! I do know of work being done with a PAC (Physicians Awareness Committee) but am as overwhelmed as yourself. God willing, someday, I’ll be able to be an advocate versus a victim. PAC would join together both experienced and interested doctors so that connective tissue disorders could be better understood and patient care might be improved. I just need to stabilize something here – ANYTHING! Enough (‘s’ word) symptoms to drive a person crazy – literally, I’m sure! Especially with doctors pathologizing us in non-applicable ways or otherwise writing us off.
I, too, struggle to comprehend and feel the need to be spoon fed. I’m killing myself trying to figure out what to work on to improve my devastatingly dysfunctional global health. I can’t understand any of it either and have always had significant intolerance to medications (contrary to having to endure doctors treat me as though I’m a druggie looking for pain pills – what a HUGE INSULT!). Where to start? What to eat? My genetic doctor says there is nothing to eat that will replace collagen + it’s not that we don’t manufacture collagen – it’s just defective collagen! I’m EDS.
Anyway, I wish I could help but I am in the same boat as you. I just wanted to let you know that I understand and care 🙂 .
WOULDN’T IT BE LOVELY IF THERE WERE A STEP BY STEP PROTOCOL? Maybe front line trials, then we could move to secondary trials and so forth. Is it Z/Z first, then Diamoxx? Or are the they supposed to be employed in conjunction with each other?? See, I truly am in your same boat. Then there is the diagnostic arena – WHAT DIAGNOSTICS CAN I ASK FOR SO THAT I CAN – IN YOUR FACE – TO ALL THE DOCTORS WHO DOLE OUT THE HIDEOUSLY DAMAGING TREATMENT?! I’m tired of being treated like a liar and enduring doctors’ trickery that suggests that it’s all in my head!! The trickery is aka gaslighting and is a form of abuse!
Yet again, I can only send support and do know that I will be sharing info as I gain it. Meanwhile, if you are able to discover any helpful treatments, please share 🙂 .