I was wondering if anyone has experience either themselves, or as a carer, of this disease. My husband has had four recurrences since his first episode in mid 2010 and three major heart surgeries with valve and ascending aortic replacement each time. His life has been in the balance on many occasions. The current episode is on his pacemaker leads. He's had the pacemaker extracted and is now in hospital on IV antibiotics. The various consultants tell us that they aren't really aware of anyone who has survived multiple recurrences of this ghastly disease but I would love to make contact with someone who has survived and to know how they have coped and dealt with it. There dont appear to be any support groups so again if anyone knows of one that would be good news too. All the best.