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22 hours ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@yaggi01 I don’t know which part of the Tennessee line of Kentucky you are near, but when we lived in Tennessee (Clarksville) I was seen at Vanderbilt and thought the ID doctor I saw there was thorough, knowledgeable, and kind. I’m sure the Mayo in Jacksonville is exemplary as well. (irene5)

Dec 12, 2018 · Extreme fatigue in MAC & Bronchiectasis

@ling123 Your take is spot on! Irene

Dec 11, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

@hydrangea Yes- extreme emotionality is real with this disease. Some of us go through the many stages of grief, and then do it all over again depending on how devastating this disease has been to our normal way of living. It has been written we often look at our life as “before MAC” and “after MAC.” I recently missed my daughter’s wedding because of this disease. I’m still not over that! Try not to let it define you! You are not alone! (Irene5)

Dec 8, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@anniepie Hi Annie. I have been on the Big 3 three times, but try as I might, my body could not tolerate them. Azithromycin is actually the only drug I could tolerate for any length of time without serious side effects except for hearing loss and tinnitus which have improved now. The ID doctor would not allow me to drive because of the color blindness that can develop from one of the other two, but not many ID doctors feel that way. MAC has been very debilitating for me due to other “comorbid” conditions. It is very important Annie to eat nutritious meals,exercise, and practice mindfulness as much as possible although that is easier said than done. This site has wonderfully caring, kind, and intelligent people who have a willingness to walk with you through this journey. So glad you found this group.

Dec 7, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@anniepie I realize you didn’t ask me that, but I did get tinnitus from the azithromycin. (Irene5)

Dec 2, 2018 · Extreme fatigue in MAC & Bronchiectasis

Yes, hugely! Had we known then what we know now, I would have had him apply for disability. He retired in 2006 at age 60 because he could barely work three days a week. (Guidance counselor) We didn’t know there were stages to sarcoid either. It has affected everything for us. And I have MAC. Tis a lovely retirement- not! The odd thing is that our neighbor got sarcoid too and it affected different organ systems for him. He looked like he had AIDs. He (our neighbor) did receive psychological help with it. He was only in his forties. My husband’s quality of life is poor to say the least. It is sad. He says a lot more “wordy dirds” now because he is so frustrated. Breathing, coughing, eating, – all are difficult! And then he feels bad because he can’t help me. No fun going on- but every day above ground is still ok by me!

Dec 1, 2018 · Extreme fatigue in MAC & Bronchiectasis

@macjane : MAC and sarcoid are two separate things although a person could have both. MAC is an OI (bacterial opportunistic infection) whereas sarcoid is an autoimmune disease. I only know know this because I have MAC, and my husband has stage 4 sarcoidosis. Irene5