At a loss… nocardia AND MAC?!!

Posted by aginn10 @aginn10, Nov 27, 2023

I had my last 2 cultures come back today showing positive for Nocardia. This makes 4 positives for both Nocardia and MAC - 8 out of 12 specimens. Is this as unheard of as it feels?

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@aginn10

Wow! That is super scary!!! That’s a lot to go through and so much waiting. While you worry it’s just progressing. That may be the worst part, all the waiting we do. I guess I feel like if it was super serious I wouldn’t be made to wait too long but sounds like that isn’t how it works either. How do you feel since the MAC treatment? I assume you’re still on meds for that? Have your cultures been negative yet?

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My cultures have been negative ever since I started the first course of antibiotics. And my last CT scan showed everything, including the cavity had closed or collapsed on itself and all the nodules and consolidation was gone in my lawn. Lawn. It said on the CT scan everything has resolved. So there was nothing now. And my ID doctor said that they very rarely ever see a case where it goes away so quickly. But even though I had a lot of nodules and a large hole in my lung, he actually told me that it was relatively early that they caught it. Even though he said I've had it for years. But it's so slow growing that they usually don't find it until you start having major problems from it. The only reason I was having problems because of the Mac is because of the Mac. I had gotten that pneumonia and the pneumonia is what had made me so sick that I had to get a CT scan. It wasn't actually the Mac. So I'm very grateful that everything is gone now. But he has kept me on the antibiotics until I hit a year which will be in March. They'll probably do one Morris CT scan and then I think he said I would get a CT scan every year after that. I think that getting on the Airakayce really helped. Even though I never did it all the time like I was supposed to. And no you would think that they would rush to get this taken care of and to fix it, but that's not how anything works in the medical field. Everything takes time, they have a process they have to go through. Even with the cancer I had on my intestine which was a very aggressive highly differentiated tumor which means that it was aggressive and fast growing. It took them a couple months before they got me in for surgery. You want to get in for surgery the next day. Haha, that's what I wanted! Anyway, I wish you all the best.

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@bellsina71

My cultures have been negative ever since I started the first course of antibiotics. And my last CT scan showed everything, including the cavity had closed or collapsed on itself and all the nodules and consolidation was gone in my lawn. Lawn. It said on the CT scan everything has resolved. So there was nothing now. And my ID doctor said that they very rarely ever see a case where it goes away so quickly. But even though I had a lot of nodules and a large hole in my lung, he actually told me that it was relatively early that they caught it. Even though he said I've had it for years. But it's so slow growing that they usually don't find it until you start having major problems from it. The only reason I was having problems because of the Mac is because of the Mac. I had gotten that pneumonia and the pneumonia is what had made me so sick that I had to get a CT scan. It wasn't actually the Mac. So I'm very grateful that everything is gone now. But he has kept me on the antibiotics until I hit a year which will be in March. They'll probably do one Morris CT scan and then I think he said I would get a CT scan every year after that. I think that getting on the Airakayce really helped. Even though I never did it all the time like I was supposed to. And no you would think that they would rush to get this taken care of and to fix it, but that's not how anything works in the medical field. Everything takes time, they have a process they have to go through. Even with the cancer I had on my intestine which was a very aggressive highly differentiated tumor which means that it was aggressive and fast growing. It took them a couple months before they got me in for surgery. You want to get in for surgery the next day. Haha, that's what I wanted! Anyway, I wish you all the best.

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So happy to hear some positive news!

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