I've just been diagnosed with this terrible disease. I never even heard of it! My treatment has not begun yet. To make matters worse -- I am allergic to macro-bid antibiotics (so they say) and I understand this is one of the main classes of drugs used to treat this.
If anyone has this disease, could you please post your experiences -for instances, what symptoms you are having, your treatment plan, etc. I feel so upset, worried, anxious - just do not know where to turn. No one to talk to that knows what it feels like to have such a weird, rare and horrible disease. Thank you so very much!