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src3acs (@src3acs)

Extreme fatigue with MAC

MAC & Bronchiectasis | Last Active: Sep 15, 2019 | Replies (310)

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@prelle1

I too had breast ca then developed MAC. I was put on the 3 Antibiotics in 2009. Did not receive any follow up or advice at MD Anderson where I was treated and decided myself to go off the meds after 9 months. Now in 2018 , my cough is back and the fatigue is extreme . I have basically had no treatment but for the icassiinalt Zithromax my GP was providing . I am basically a. Invalid now not really going out. I need some treatment and MD Andrrson won’t really treat. I am so glad to get to this site and all of you because I did not know anyone who had the disease except a guy who had part of his lung cut out. Where should I go for treatment ? Which is the best clinic and the best doctors. I was really ready to give up until I heard all of your voices! Thank you did much ! I had just felt so alone in this and the doctors I saw just didn’t want to get involved in this disease.

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Replies to "I too had breast ca then developed MAC. I was put on the 3 Antibiotics in..."

@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.