I am sorry that these docs cannot seem to help you. You really must still have some fight left in you if you were able to stand up to the doctor and argue like that. I hope you get your referral to the Cleveland Clinic soon. I am wondering what the doctors ever said about prophyria (not sure I remember the spelling)? You googled it and said it seemed to fit in many ways. If you get the Discovery Health Channel, they play this episode of Mystery ER several times a week. Maybe you could watch and see how well it parallels your situation. It seems they have covered everything it could possibly be and the treatments do not work. Are they thinking it's a rare disease at this point? I am praying and hoping the best for you. Please continue to update.