At a loss… nocardia AND MAC?!!

There is a FB group called Lung Matters, many members have had that.

@aginn10 I believe it is not uncommon to have both. Or MAC with Pseudomonas. Usually, if there is a significant amount, the Nocardia or Pseudo is treated first, then the MAC.
What has the pulmonologist said about these results? Are you on any antibiotic therapy at this point?
Sue

Have they found out why you are getting these? I never heard of Norcadia so I had to look it up but it's also something people get with a weakened immune system. I'm still trying to figure out how I got Mac. Or why I got it. I just figure if they can find the reason why you get these infections then they can treat the cause. I saw an immunologist and they did so many tests and all came back normal. I've had cancer twice but both times dodged a bullet so I don't think that's the reason either. No chemo or anything. I was just curious if they tried to figure out why you have mac or this other infection to begin with?! I wish you all the best of luck. And yes, it does seem like the worst of luck doesn't it??! I hope they can get it under control.

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?

I’m on the big 3, the Azithromycin, rifampin and Ethanbutol. My pulmonologist, who initially wooed me off my feel, has basically pawned me off on the Infectious disease doc. Idk if it’s sense I don’t have breathing problems yet, even my CT scans are clear and perfect. Which is amazing considering how much crap I cough up daily! I personally dont feel like I have stellar doctors, but the treatment I’m on is the standard for these. I find it scary to have both of these at once. I guess maybe I’m the only one? I guess if she isn’t terribly concerned then I shouldn’t be? I don’t know but it’s sad when you have all these specialists and you have to get most of your answers and help from a Facebook group or support group online.

I'm rereading your posts, and I think what brought you to this point was a "prefect storm" of adverse events - soil/compost exposure, Covid that weakened your lungs, and the nasty opportunists that jumped in!
Given your young age and lack of apparent damage (yet) have you considered seeking out one of the centers of excellence for treating lungs? I wish I had known at 48, instead of 68, what was happening to my lungs - I may have avoided some of the stuff I live with now.

Depending on your location, Mayo, University of Texas at Tyler, Cleveland Clinic...there are some others...I don't think NJH at this point as their focus is bronchiectasis.

I'm not sure whether nocardia will respond to the Big 3 - it will take someone very well versed in all lung issues to determine that. I do know "wait and watch" is less of an option that for MAC.

Sue

I think it’s different meds as well. And yes, there is no damage as of yet or minimal damage. I did reach out to UT Tyler - I honestly didn’t think I was in a spot to need a true lung specialist but maybe I do, to be proactive, or stay ahead of damage? I lost my dad at 68 to Pulmonary Fibrosis. So it certainly does scare me. I’ve never smoked or done anything to damage my lungs, I believe like you said the perfect storm. I don’t ever get that lucky with the lotto!!

If I were in your situation, I would reach out to pulmo and ID at UT Tyler - they are noted for both. If you plan, like most of us, to live your best life possible for as long as possible, early intervention makes a lot of sense.

Sue

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.

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?