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15 hours ago · Have to start the big three in MAC & Bronchiectasis

I spoke with the Infectious Disease Doctor and he told me he will be adding a 3rd one back so I anticipate being on 3 again before the end of the week. I am so glad I have all of you to communicate with because you are all the only ones that really understand what each one of us are going through. So thank you all again. I have no idea what I would have done with out you all.

18 hours ago · Have to start the big three in MAC & Bronchiectasis

I am just so sad that Pulmonologist let my lungs get the point they are before recommending treatment. I reacted to the Rifabutin so now for week I am on 2 of the 3 before he will replace it with something else. He doesn’t talk much to me and it makes me feel very isolated. He did no baseline labs and said no when I asked for them. I am pretty frustrated.

1 day ago · Have to start the big three in MAC & Bronchiectasis

Thank you, It sounds like they may switch rifabutin to rifampin and see how that goes. I hope that one is tolerable.

1 day ago · Have to start the big three in MAC & Bronchiectasis

Oh my gosh, which ones are they?

1 day ago · Have to start the big three in MAC & Bronchiectasis

Yes it looks like it is a new study

1 day ago · Have to start the big three in MAC & Bronchiectasis

I am about 5 hours from Mayo

1 day ago · Have to start the big three in MAC & Bronchiectasis

I have been taking the Big 3 for just over a week. The end of the first week I started to get very severe muscle aching the day after the medications. He had me retry just to make sure and it happened again. I think now I have to start over with one drug at a time but I think they are thinking it is Rifabutin that apparently can cause flulike symptoms. Has anyone had to slowly start back up on it and be able to tolerate it over time? I am already discouraged. I want my treatment to work and I don’t want my Doctors thinking I am a complainer. Does anyone see MD at Mayo in Rochester. I am going to try for an apt there but I know it will be out or Network for insurance.