i know one person who did the protocol and said it was amazing, but she didn't have a full diagnosis of EB…. I would love to hear about your experience..
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My daughter also is showing adrenal fatigue, orthostatic hypotension, heart rate variability issues, GI issues, headaches, low temperature. I believe she has chronic EB, but her physicians after diagnosing her 1st with have EP antibodies, then 2nd having mono, then 3rd reversing and saying they thought she had HAD mono, but didn't have it now, and after 6 weeks they basically implied it was a psychological issue. here we are 4 months later, and she's doing at home study, and goes through waves of sleeping lots, and being slightly more active. She has no life anymore at 15. If you haven't read Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal, it's got a protocol in it. My 15 yo just won't do it, but i hear good things about it. Also if you're in California and can see Michael Shpak LAc , in Pleasant Hill, he has been the best through this. Although it's not what' I'd call affordable and we're still struggling with it.