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Neucrotizing Granuloma MAC infection

Posted by deborahuhrich @deborahuhrich, Dec 24, 2024

I was recently diagnosed with a necrotizing granuloma which was cultured as mycobacterium axium complex. My pulmonary specialist seems to think the necrotizing will destroy the MAC. So scheduled for another CT this week. It has been a month since other CT so he wants to see how much it shrinks. Has anyone else had this? I have a jacuzzi outside which waterfalls it my pool. He thinks this must have been the source so I sample the spa, shower head, and faucet. Not detectable in all cases. I found lab Environmental Testing in Kentucky that does vPCR testing which differentiates from dead and live colonies so it can help u find the source. I work a lot with soil this summer putting down sod so I think this might have been the source. Anyways. I have no symptoms so wondering if anyone else had this necrotizing granuloma which took care of bacteria?

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blm1007blm1007 | @blm1007blm1007 | Jan 4 9:47am
In reply to @deborahuhrich "Thank you for response. I spent a considerable amount of time this summer using bags of..." + (show)
@deborahuhrich

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.

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I just read your post about the 50 bags of mulch.
When I opened up one bag of peat moss I knew I did something wrong and quietly said to myself "You just breathed all that in, that's not good." This was shortly before I was diagnosed with BE/MAC/MAI.
I have always worked in the landscapes of my homes...from childhood until the BE diagnosis.
Haven't been working in the yard for a couple of years now....I have been able to hire the work out, so far.
Barbara

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blm1007blm1007 | @blm1007blm1007 | Jan 4 10:00am
In reply to @deborahuhrich "My pulmonary specialist has just gotten back to me, since the necrotizing granuloma has shrunk from..." + (show)
@deborahuhrich

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?

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I just read your most recent post after the one speaking of the 50 bags of mulch.
My first thoughts after reading your most recent post and what came to mind "warm aerosols seen rising from a heated spa" .
So, here we are with things we have done and do for enjoyment and have now found ourselves saying to ourselves 'Who knew!" or "I wish I knew!"
I have the pool but not the spa.
Barbara

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 4 8:35pm
In reply to @blm1007blm1007 "I just read your most recent post after the one speaking of the 50 bags of..." + (show)
@blm1007blm1007

I just read your most recent post after the one speaking of the 50 bags of mulch.
My first thoughts after reading your most recent post and what came to mind "warm aerosols seen rising from a heated spa" .
So, here we are with things we have done and do for enjoyment and have now found ourselves saying to ourselves 'Who knew!" or "I wish I knew!"
I have the pool but not the spa.
Barbara

Jump to this post

To Barbara, @deborahuhrich and everyone else who has said to themselves "If only I knew..." - Remember that you have a rare defect in your lungs that makes you susceptible to NTM, pseudomonas and other issues - what you did was perfectly normal for 300,000,000 million other people!

So you can do what I did, and leave the regrets behind. I didn't know I had bronchiectasis until I was sick, so no sense worrying now where I got it or NTM. My ID doc assured me years ago that one lives with BE, but very few people die from it, so go out and live my best life - but don't inhale peat dust, or use indoor spas or pools.

Sue

P.S. My Mom had BE (and probably undiagnosed MAC
- she used to get pneumonia 3-4 times a year.) She died
In her mid-eighties of something totally unre.ated.

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deborahuhrich | @deborahuhrich | Jan 5 7:58am

Thank you! That’s what I intend on doing. Dr thinks it is my outside jacuzzi even though water has been tested as non detectable. I live in Florida. Came down here for the sun , water and beautiful weather. Hard to protect yourself from everything when u don’t know how u got it.

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