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My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was prescribed the big 3. He found he had a very difficult time tolerating them, especially Rifabutin (which he said gave him heart pains). He asked for a substitute for Rifabutin, and was told there wasn't any by his pulmonologist, but an infectologist would be able to tell him. He went to her, and she suggested that he not take any antibiotics. He wanted another opinion, so I contacted a pulmonologist/professor from Stanford who agreed to see him. This physician said either take all three, or take none. I believe his final suggestion was not to take any.
Replies to "My husband was first diagnosed with MAC and then subsequently with bronchiactasis. At first he was..."
@bonniewhite56, Hi Bonnie. So what did you think of Dr Leventhal?
@joan912 Hi Joan! When was your husband diagnosed? How is he doing now?
@joan912 I swear, I wish that medical community could formulate a GOLD STANDARD for treating us! I really do not like all of the conflicting views on how to treat our disease. It is confusing.
He was diagnosed with MAC in March this year, and then his next CT Scan in May showed some bronchiactasis in one part of his lung. He's had symptoms of some kind of lung infection for years with fevers, fatigue, and severe night sweats. It wasn't until this year it took a turn for the worse and he finally received a definite diagnosis. Poor guy, this disease is unmercifully persistent.
Loved him. Feel safe if that makes sense. We have a plan of action with testing. He also noted other things on my scans that my doctors never addressed. Things that could be serious. For that I'm grateful for his expertise. Thanks for mentioning his name and the accolades to him!!
@bonniewhite56 Oh, I am so glad that you liked him! He picked up on things that others had missed on me also. I adore that man. He has improved my quality of life tenfold. Yay!!!
@joan912 Joan, it sounds like he may have had it for years before it was caught. If he is not up to doing the big three antibiotics, have him discuss 'suppression' therapy; where he is given alternating single antibiotics. Maybe you saw my post about the ones I take. I posted it today. Some doctors do not like to treat that way, some do. It may be something he can discuss with his doctor. (I think it was you that mentioned he was not tolerating the BIG THREE?) In your opinion, do you think he is seeing a knowledgeable doctor? Please keep us posted.
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My new doctor at Mayo just said no to antibiotics. I'm in total agreement and everything I read including his comments are that is an old way of thinking. But everyone is different and at different places in this condition. Just my experience.