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Doctor visit blues…don’t know what to do

Emmarose47

Senior Member
Messages
2,127
Location
UK
@wabi sabi those links are great super super long so no good for me.
If u do learn any bits of info and or know of any of their info in print form I'd be really interested. I'd really like to learn some of the science as I'm v limited on knowledge
 

Mouse girl

Senior Member
Messages
582
Look, there is no treatment for this illness. Now, your son might have other stuff going on, let's hope so as many with odd illnesses do find things to help.

I've been in this game for over 30 years. Was very active in the patient community back in the day when there was good info out there and people hadn't gone so crazy with computers, social media and crazy misinformation etc. there used to be so much support out there and doctor lists, all kinds of great stuff back in the day.

anyways, kids do have the best prognosis of recovering for sure. anti virals, anti fungals or even intestinal targeted anti biotics have cured many patients but you have to have a doc who knows what they are doing. I don't know who knows what they are doing in this era. I wish i even knew places to find reliable info but i honestly don't. I can't even find a doc in Los Angeles who believes or will take CFS/ME pateints. and i don't need treatment as i've been there done that, got much worse and lost way too much time and money on all of it but need doc for paperwork, keeping medicare and other legal matters like jury duty etc. there are some docs in northern california and new york you might check into. My heart goes out to you. i can't imagine the pain you feel for your baby and how much you want him to recover. I will say, many kids do recover and lead normal lives. Kids and the first 5 years are the good windows for recovery for sure. Keep looking for a doc you like is all i can suggest. so sorry hon.