← Return to At NJH and need to vent

Discussion

At NJH and need to vent

MAC & Bronchiectasis | Last Active: Jul 6, 2023 | Replies (70)

Comment receiving replies
@busybeans

I was diagnosed in 2010 and tried the Big 3 twice. I failed both times. The side effects were too debilitating for me, and I discovered I am allergic to azithromycin and rifampin. Yes, my doctor wanted me to take them and still wants me to try to take them. Fortunately, he has allowed me to make my own decisions about my body and my quality of life. I have managed with airway clearance to see only a slow and/or stable progression. That's not to say that I haven't had a few terrifying episodes of hemoptysis when I've had a flare of one strain or another (and this is why the doctor would like for me to be on the Big 3). I have bronchiectasis and have had many different strains of NTM (and I've always figured some combination of those things meant I had COPD...funny, but I've never asked). At present (as far as I know until my next sputum sample), I am positive for kansasii (a slower growing strain). I am a non-productive cougher who hates airway clearance but I do it anyway - with 7% saline solution - once a day, not twice as instructed. In my experience, Dr Daley is a kind and caring physician. I hope that is your experience as well. Being there for the evaluation period is so very stressful...I'll be sending good thoughts your way.

Jump to this post


Replies to "I was diagnosed in 2010 and tried the Big 3 twice. I failed both times. The..."

Hi there, your response has brought me great comfort. We both are very sensitive to meds it seems and I TOTALLY understand where you are coming from. The thing that gets me as I read more and more on this blog is that a lot of people take the big 3 for like 18 months, they develop tinnitus, horrendous fatigue and flu like symptoms, and sight damage not to mention nausea and quality of life. Then, when they stop these meds, the mac comes right back again. I KNOW, without a doubt, that I would not be able to tolerate the big 3. I was prescribed amoxicillin recently which I used to take in my youth with no problem. After two days I had to get off of it (I’m 72 now)…it made me sick as a dog and I developed a wicked case of oral,thrush that took me forever to get rid of. Bon

Do you get scared when you get a little breathless. Everyone tells me it’s cause I’m not used to the altitude in denver coming from Georgia. They put me on oxygen,…..the only time at home I feel that way is when my costochondritis ( ribs) act up..but here I feel it much more. All the technicians and nurses say it’s that I’m not acclimated to mike high elevation. Dr Eddy said it’s from the Mac etc…so now I’m scared……who dini believe?