Treatment for Burnside-Butler syndrome - for Kaos.Theory

Hey I am so sorry for not responding sooner! I'm sorry to be a pain but if there's any chance/possibility that she would be willing to and/or help me, it would mean the world to me... Every doctor I've spoken to here has told me the same thing; apparently there's nothing that can be done to help me in any way....I even got told it wouldn't be worth me getting a full genetic screening test done to find out the full extent of what may be wrong :( I'm at a loss and becoming depressed not knowing what to do or who to try and talk to next :( I hope you have been well and since we last spoke!!!

She is not familiar with B-B. However, she also said that she’s absolutely willing and able to take on challenging patients and help them find the healthiest, pain-free path forward. She is based in Portland, Oregon but works remotely with some of her patients, using their local laboratories. Honestly she’s the best doctor I’ve ever seen.

Hi! I haven’t forgotten about you. My ND is on vacation this week, which I would have known had I read all of the emails from her office! 🙄😐 I’m zooming with her on the 3rd I think, but if she gets back to me before that, I’ll msg you. 🥰

I cannot thank you enough! Honestly I am so grateful. This past 2 years since my son being first diagnosed, then me 8 months later and now my daughter, it has been so overwhelming and confusing and being somewhat socially isolated has lead to this intense and constant feeling of being lost (not sure if that makes sense) Thankyou again for taking time out of your day to help 🥰