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41 with MAC and Haemophilus Influenzae

MAC & Bronchiectasis | Last Active: Sep 29 5:47pm | Replies (15)

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@ursala7 Thanks for sharing. How are you faring with the big 3 medications? Any tips? 🙂 Praying for your full recovery. 🙏

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Replies to "@ursala7 Thanks for sharing. How are you faring with the big 3 medications? Any tips? :)..."

@silvermic22 Thanks! It has been a bit rough. I have to take the azithromycin mid-day with food, because I get some stomach pains from it. I have slight numbing in the toes from Ethambutol. The Rifabutin is discoloring my teeth - most of that came off with cleaning, so we upped the cleaning schedule to 3X per year. I'm also on Brinsupri and have some hair loss. I have lost weight. I remind myself of my long-gone shitzu dog, Sonja. Wish she was here to be with me now.
All this would be worth it IF I could kick the infection, but so far, I have not. The daytime is ok, I move around like normal and do all my therapy, but the nights are much worse, as the congestion builds and keeps me from sleeping, or I get stiff trying to sleep as upright as I can. I keep telling myself "This too shall pass".

@silvermic22 Postcript to how am I feeling: In all the big 3 is tolerable, even for an almost 77 year old. But because my bronchiectasis is so advanced, the MAC will be difficult to eradicate - therefore the plan is to go to MAYO to be sure I am getting the best drug treatment plan. You are only half my age. It's a silver lining you got diagnosed; by getting treatment early, you'll have all the tools required to keep your disease from progressing. I didn't even know/understand that I had this when I was in my 40's, but looking back on the illnesses I had, it's pretty plain to see that i DID have it that early. My mother also had something like this, which was forever undiagnosed. But the same symptoms. She died after many pneumonias and her bacteria became resistant. The docs were as unaware as the general public back then, as to the term Bronchiectasis. Everything was labeled COPD.