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At NJH and need to vent

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

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@healthybon

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

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Replies to "Hi there, your response has brought me great comfort. We both are very sensitive to meds..."

It was very hard for me, Bon, to say "No, I'm not doing these drugs." But then, like you, I realized folks were taking them, becoming very ill in the process, and in the end, had to take them for another year and a half to clear the NTM. I just wasn't willing to give up my life. And like you, I am very sensitive to drugs and don't do well on anything. But the woman I roomed with on my two week eval at NJH was on all three, and a fourth was added via a pic line while she was there. She eventually cleared the NTM and she never had one side effect other than fatigue. So there are folks who tolerate them and do well. I think it's a very personal decision for which one has to consider all aspects of his/her life. I'm 70 - soon to be 71 - and don't regret my decision. If anyone could have guaranteed me that 18 months of misery would cure the disease I would have toughed it out if I could have, but as you know, there are no guarantees with this. So we do the best we can and be as gentle with ourselves as possible while coping with an overwhelming disease and decision.