Update On Treatment of MAC

Hello All! I had a vist to the Mayo this past Tues. I was first diagnosed with MAC in 2005. I refused the three drug standard treatment. Several weeks on antibiotics knocked it out. It came back in 2013, was treated with one antibiotic for 10 days a month on a monthly basis. It cleared up. Then in 2016, had pseudomonas infection. It was treated with bi-monthly tobramysin & cipro. It too cleared up.I asked my Dr why in the four yrs I have been going to the Mayo; that he never put me on the BIG THREE antibiotics. His reply, and I quote with his permission: The BIG THREE treatment is ‘old school’ and it is OVER-TREATING most patients. He said he gets new patients in seeking second opinions and that he takes no less than three people a week OFF of the BIG THREE. I asked what he prescribes instead. He said it varies depending on colony size, specie, patient history, etc. He stated that most drs prescribe the BIG THREE because it was the norm years ago, and they honestly do not know much about the disease. He only uses the BIG THREE when a patient does not respond to single antibiotic treatments, or is SEVERE and CHRONIC. I would guess Katherine may fall into that catagory. He also said that he sometimes doesn’t recommend treatment at all because 90% of the time, the MAC clears up on it’s own. That may be why someone recently posted she was confused as to why her dr did not want to treat it yet and wait and see. I found this info VERY interesting.

Liked by janovr, tdrell, Carolyn

@joan912

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.

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@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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