Neucrotizing Granuloma MAC infection

Interesting. I too was recently diagnosed with a necrotizing granuloma that has caused a cavitation in my lung. It also came up MAC positive. My doctors (ID and pulmonologist) let it go untreated for 6 months but the followup CT scan showed that it doubled in growth. As a result i just started on the big 3 antibiotics to treat the MAC. I am also asymptomatic. I do not have bronchiectasis which seems to be a big risk factor for MAC but am an asthmatic and have been on inhaled steroids for 25 years. Thinking that is the cause for my infection. Good luck to you and keep us posted on your progress. Im very curious to hear if your granuloma goes away without treatment.

@deborahuhrich
Watch and wait is frequently the choice if you are asymptomatic, I am glad you are being followed closely.
While a necrotizing granuloma usually is thought to encase an infection and remove it, there is some evidence that in the case of mycobacteria, it surrounds it and provides a safe place to multiply. That seems to be what happened to @melb0606 .

Do you know if they consulted with an infectious disease specialist, or any of the MAC specialists at National Jewish Health, Mayo, NYU Langone, UT Tyler or elsewhere?

It will be interesting to hear about your results.

Thank you for responding! I will let you know after next CT scan on 12/26. They have no idea how I got this - if not water then must be soil. I am not immune suppressed and very active. I do not think they have consulted anyone else.. just concerned that I do not want it popping up worst in future. I did read something about taking it out of the lung. It is in the lingual and I have good PFT despite having this mass in lung. It got up to over 34mm before I got biopsied. So wondering too if taking it out would be better than antibiotics but guess I will see after scan what Dr says. Thank you ! Will keep u posted.

As often posted on this site it is hard to know what causes the Bronchiectasis and the added possible infections (s). I would imagine you have read about steroids and how they do and how they can affect the immune system...if that is what you meant by "Thinking that is the cause for my infection."
So much to know and how we want to do right by ourselves with what has been said to help relieve illnesses...yet there might always be consequences. Decisions, decisions...choices, choices. I am in the midst of that also, decisions and choices.
Wishing you all that you want for yourself..!!
Barbara

My follow up Chest CT scan showed that the necrotizing granuloma is less than half the size it was a month ago. Waiting to see what my pulmonary specialist says at Mayo to see if he will continue to see if resolves without antibiotics. Since my water samples of Spa/pool, drinking water and shower came back negative vPCR testing -been doing thinking of where I could have gotten this to avoid future exposure. I put down a lot of mulch this summer probably 40 bags without mask so no wondering if that was the source. Does anyone know MAC prevalence in soil vs water?

MAC is known to be in abundance in peat-rich soil, which I believe is in mulch. Such a bummer. I miss my previous gardening/landscape days!
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf

Thank you for response. I spent a considerable amount of time this summer using bags of peat moss rich soil repotting and potting new plants and also spread 50 bags of mulch. Of course no mask. Who knew. Thanks for response as now more diligent with masks and limiting exposure.

Can you tell me what type of facility did the testing of your water? I would like to have this done and don’t have any idea where to go.

I spent a lot of time trying to find a lab that tests for MAC . This lab Environmental Safety Technologies-www.estechlab.com does vPCR testing which distinguishes between dead and live colonies also u can get results in days vs cultures that cost 3x more and take 6 weeks. I called them 502-893-6080 ordered the sample bottles. I paid extra to get sample bottles over weekend. U need to test on Monday and send it out to them overnight due to water and sample media. Test code P002 for vPCR Mycobacterium. They got bottles Tuesday. Gave me results on Wednesday. I tested my Spa, shower head and tap water. They charge $150 per sample. Plus u pay for Overnight shipping. But know I know it is not in SPA. Needless to say my SPA goes into pool. I have opted to get a UVc germinal light anyways for spa/pool 425 nm which is effective altering DNA in mycobacterium as the soil can go into the pool just to be on safe side

My pulmonary specialist has just gotten back to me, since the necrotizing granuloma has shrunk from mass to nodule he has told me to come back in 6 months for my hopefully last CT and visit. No antibiotics. He says to protect my lungs is key. I am installing a germicide UVc light on jacuzzi and pool and will use N95 3m surgical masks ( good if water splashes and protects from MAC) if I go in spa during next 6 months. Even though water has been tested and not detectable for MAC he still thinks it’s the source vs soil as he says aerosol is easy way to get infected. Still will wear mask doing yard work too. Interested if this happened to anyone else?