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At a loss… nocardia AND MAC?!!
MAC & Bronchiectasis | Last Active: Dec 1, 2023 | Replies (12)Comment receiving replies
Thanks for replying. No clue why this is happening. I have never been sick or had any issues other than the flu, colds and self inflicted pain (tummy tuck etc) in my 48 years. Always been extremely healthy. Then, and I don’t know nor does any of the doctors, I got a great job at Scott’s Miracle Gro and relocated out to the “country” in 2021. We have a huge compost yard @ work and it’s always windy and you constantly get dust and dirt in your eyes and hair so you can only assume you inhale it as well. In 8/2022 I had a rough 8 days with Covid. No hospital or anything just super sick lots of congestion. After the Covid went away the congestion didn’t. End of that month I began coughing up black crazy scary looking stuff which turned out to be fungal. Almost rid of it finally.. I began seeing doctors about it in 11/2022 and here we are almost 1/2024 and they’ve just now determined based on filters it’s a triple infection with fungal, MAC and nocardia. Nocardia is relatively new to the medical community and I’m not sure which is worst, MAC or Nocardia - they prolly are just as bad as the other. Unlike so many who’s posts I’ve read who are truly suffering, can’t breathe etc I can still breathe good (thank you God) don’t have shortness of breath but the fatigue is real! And my cough is horrible. Pulmonologist said I had bronchiectasis but the Ct scan said I didn’t. So I guess we don’t know. If I am immunocompetent I don’t know it.
When you say yours keeps coming back, do you get through a treatment and test negative only to have it return? Or is this your first time? Are you on meds yet? What all does an immunologist do?
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So I don't know if mine is going to come back or not yet. I found out I had it in about February. In January I went to the hospital because I was coughing a blood and they did a CT scan and they saw this large mass on my lung which they assumed was cancer because I smoked for years. I couldn't. 2019. And that's one of the symptoms of lung cancer is coughing up blood into them. It looked like a large mass so it took them weeks to schedule a bronchoscopy and in the meantime I had a pet scan and the PET scan lit up on that area. So that really scared me but the PET scan also said that it seem more like an infection than cancer but when they did the bronchoscopy after weeks and weeks they called and told me I Klebsiella Pneumonia and then a couple weeks later they called and asked me if I could possibly have TB I'm not narrowed it down to Mac. What they were seeing on the CAT scan was a large abscessed cavity. But when they went in there with the broncoscopy they did a washing and I think that washed all the crap out of there. It turned out to be a almost 3 and 1/2 in cavity. Sick
I also found out during this time that I actually did have cancer on my small intestine so I had surgery and March for that, and while I was in the hospital they started me on two antibiotics for the Mac. They started me on azithromycin and Ethambutol not Rimifkin because I was on another medication that would not like that. So I was only on two medications and within days they scheduled a CT guided along biopsy because they thought still that there was probably cancer under this infection. But when they did the initial rounds of the CT scan for that guided biopsy it had cleared so much and just a few days that they could believe it. Within 3 months when I had my next CT scan, the cavity didn't shrink at all but all the little nodules and consolidation had all dissipated. 3 months later I had another CT scan and it was completely healed. So the cavity had completely closed. No nodules, no consolidation. Nothing. I started taking Airakayce a few months ago. And I think that really helped a lot but I never took it everyday even though I was supposed to and I still don't. I just do it sporadically because I don't have time. It's really kind of a pain to do. I definitely would be doing it more if there was something there still.
My ID doc is keeping me on the antibiotics and everything until a year has passed which will be in March since I started everything.
By the way after I left the hospital you know they thought that was cancer and it took a long time to get into see a pulmonologist and to have the PET scan done and then the biopsy done. And during this time I had that pneumonia and I was getting more and more and more sick. So to me I thought well this is cancer and it's just spreading because you hear that a lot with one cancer that once they find it it can happen quickly. That's what I thought was happening and when they found the other cancer on my intestine I just figured. Well it's metastasized and it's everywhere and I think that's what my whole family thought. It was not a good time. It sounds like you're a lot like me though! Even though I have a hole in my lung or I did have a hole in my long. I never had problems breathing, I never weezed, nothing. It's just so strange.