I have been diagnosed with this in the last couple of years after suffering recurrent infections for years that were diagnosed as different things and eventually ending up in the tropical disease department!
Well that is a whole other story.
The thing I wonder is do other people see a specialist regularly? I have had two appointments since being diagnosed. I was offered 'pulsed Arizothromycin
I think it was called it effected my hearing straight away - I never knew the they can make you deaf!
He told then more less hard luck if I couldn't take them and he would write when I had another appointment that was about a year ago I feel I am worse and wonder what treatments other people are getting.
I have been taking Vitamin D and some herbal cough medicine and Antibiotics when I get a bad infection.
Any advice would be great