What’s the youngest person to have MAC?

That is an interesting question. I was not diagnosed with MAC till I became a retired elderly lady. However , as a child I had an X-ray and the comment was it looked like “ I had come in contact with TB.” I had symptoms and wonder to this day if it weren’t really MAC. I swam in public pools a lot. I’m thinking you are lucky to be diagnosed young. Your body will be better able to get rid of it! Good luck! Irene5

Error. Thought I’d found one, but it was MAC in CF patients, who are usually younger) and I can’t delete.

I had a Dr tell me the same thing when I was 23. “Have you had TB”. I am now 69. It took 2 years to actually diagnose. But I have been SOB all my life. Everything is really coming to life now. I lived on a farm, have 7 siblings but none of them seem to have a issue

You got me beat. But I had no symptoms and found out through a CT scan followed by a bronchoscopy last summer at the age of 55.
My type (intracellulare) came from soil most likely which I worked with since my first job at a greenhouse at 15 and then in my 30s and 40s when I had my own gardening business. So I’ve no idea how long I had in there either.

I was diagnosed two years ago at the age of 74 with MAC. I too was exposed to TB as a kid and although I was strong enough to fight it off, it left a scar on my left lung. The MAC is in my right lung. To date I have very few symptoms and we have been doing a wait and watch. Last year I found out purely by accident ( requested copies of every test I have had done since 2016) that a radiologist suspected MAC in 2016 and my pulmonologist never told me and never sent me for any further CT scans etc. I switched to a new Dr. last year. I believe my new Dr. wants to do a susceptibility test on me through a bronchoscopy so that will be the next step to see if maybe one med would do the job versus 3. Best wishes to everyone dealing with this disease and others.

I was diagnosed at age 46. I believe it is from my infant pneumonia that caused mild bronchiectasis and developed NTM when I got older. Most MAC patients have bronchiectasis which help catch the bugs when immune is down.

Actually, young children who are immuno-compromised or have Cystic Fibrosis also get MAC (and Bronchiectasis). My daughter is a high school nurse, and has had CF kids with MAC who come to neb in the middle of the day.

I cant imagine these kids will have to nebu since young!!
MAC is also an opportunistic disease that happens to immune normal people, who are slender type.

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.

Grrrr, the software says the file size is too big for the attachment which makes no sense since I got it through this group. @scoop if you are able to can you post another copy of “A Physician’s View: Guide for Patients with NTM Infections” with the colorful lungs on the front?