What’s the youngest person to have MAC?

My understanding is that historically BE was considered a disease primarily found in children as it is commonly associated with CF. So yes, in the CF community being young and diagnosed with BE seems to be common. And of course BE is a risk factor for MAC. If not already done, my suggestion for anyone (female) diagnosed with BE before menopause, and certainly anyone younger than 40, would be to get a complete workup for CF. There is a basic genetic test, a higher level genetic test, and the sweat test. Although I have had both genetic tests (negative), NJH recommends I still get the sweat test which surprised me. There are a number of genetic and autoimmune conditions that can cause BE and while I think everyone who is diagnosed with BE should be evaluated for these conditions certainly the younger one is at diagnosis the more I as a patient would push for a complete workup. @vegita182 if your CT comes back negative for BE, my question would be are there any other structural lung diseases, asthma, COPD (38 seems young for COPD but I don’t have any experience with it). If not, and MAC seems to be standing alone then it’s the proverbial head- scratcher. I have no history of lung infections or lung disease of any kind prior to my recent diagnosis of BE/MAC. I am 58. I suspect, but cannot possibly know, that my MAC infection may have caused my BE. MAC does cause BE and in those without a diagnosis of lung disease prior to a MAC diagnosis there is a bit of a chicken-egg issue. My local ID doctor, who is not an NTM specialist, says one cannot get MAC without structural lung disease, period. I have never heard an NTM specialist say this, quite the opposite; it seems less likely to get MAC in the absence of lung disease but certainly not impossible as my local ID doctor insists. From my reading, it seems there is a lot unknown about the “why” of MAC infection in the small few of us who get infected. Sue recently posted a study showing that globally only 10% of BE patients get infected with MAC. To me, a patient with no medical training whatsoever, that does suggest something more is at play for those of us who get infected. It may be a perfect storm type scenario where multiple risk factors come together; so far, they have not identified a genetic factor underlying MAC infection specifically. It is all hard to say. But a MAC diagnosis at 38 does seem quite young for someone without CF and like you I would want to dig in and see if there is something discernible behind that. I think your CT results will be an important starting point. Attached is some information on NTM that another member @scoop previously posted that gives a great overall discussion on NTM and talks about some of the genetic/autoimmune disorders that may play a part.

I suspect I probably have BE. I had recurrent bouts of bronchitis as a teenager that all but stopped in my 20’s and 30’s. It wasn’t until Covid that I had a true chest infection since then. Last December before my symptoms started I tested positive for Covid and influenza at the same time. In my mind maybe I had MAC and it was just colonized asymptomatic, then the covid flu combo caused my immune system to lose control of it?

@vegita182 there is a support group for those with BE/NTM under 50-ish. I could be a good additional resource for you. Check out the link for a calendar of support group meetings, and scroll to the one for under 50-ish. It looks like it is once a month.
https://connect.ntminfo.org/events/calendar

I’m 35 and was just diagnosed. Recently had my first child in September, went to the ER 9 days postpartum with chest pain and some signs of infection. Was treated for pneumonia but the chest pain lasted for about 3
months. Have struggled to sort out potential MAC symptoms from normal postpartum symptoms (e.g. night sweats) but at this point I am largely asymptomatic. My pulm wants me to start treatment regardless because of how my CT looks (though this is also atypical) - the MAC was found from biopsy because I haven’t even been able to cough up any sputum. I had the same question as you do, would be really interested to hear stories from other young and healthy folks because it seems bizarre.

I’m 35 and was just diagnosed. Recently had my first child in September, went to the ER 9 days postpartum with chest pain and some signs of infection. Was treated for pneumonia but the chest pain lasted for about 3
months. Have struggled to sort out potential MAC symptoms from normal postpartum symptoms (e.g. night sweats) but at this point I am largely asymptomatic. My pulm wants me to start treatment regardless because of how my CT looks (though this is also atypical) - the MAC was found from biopsy because I haven’t even been able to cough up any sputum. I had the same question as you do, would be really interested to hear stories from other young and healthy folks because it seems bizarre.

I’m 35 and was just diagnosed. Recently had my first child in September, went to the ER 9 days postpartum with chest pain and some signs of infection. Was treated for pneumonia but the chest pain lasted for about 3
months. Have struggled to sort out potential MAC symptoms from normal postpartum symptoms (e.g. night sweats) but at this point I am largely asymptomatic. My pulm wants me to start treatment regardless because of how my CT looks (though this is also atypical) - the MAC was found from biopsy because I haven’t even been able to cough up any sputum. I had the same question as you do, would be really interested to hear stories from other young and healthy folks because it seems bizarre.

What are the symptoms you do have? Mine is a burning sensation in a specific spot in my right lung. This comes and goes but when it’s burning I feel feverish and sometimes short of breath and fatigued.

My only consistent symptom has been pain in my right lung when taking deep breaths - I was managing it with ibuprofen for about 3 months and then ultimately was able to wean myself off a few weeks ago. The pain moved around for a bit, which I was told made sense (referred pain) because the mass-like thing in my lung is right against the pleura. Now I feel barely any pain at all - just a hint of it still being there. I never had a cough or was able to produce any sputum so I ultimately had to get a needle biopsy which showed granulomitis inflammation and MAC on the long culture. I've had like 6 CT scans at this point since my first ER visit and nothing has really changed there.

I've had a bunch of other weird things in my body on and off...random abdominal pain, knee pain, vision that seems to have deteriorated kind of rapidly. I am also seeing a rheumatologist but all my abnormal tests tend to be nonspecific and thus inconclusive.

Pulm thinks I should treat because the thing in my lung is quite large and she worries about loss of lung function long-term or risk of having this infection hanging out in my body if I were to get pregnant again. She's consulted with her mentor who is an expert in MAC but I'm hoping to get one more positive confirmation before I start treatment.

I say definitely follow up on the CT scans - no reason that you shouldn't get results by the next day.