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'm 54 as of November - same month I was diagnosed and only due to incidental lung findings on coronary calcium scan (CT) for baseline athlerosclerosis. So, post-broncoscopy, etc. I was confirmed to have MAC and started first abx today. I have zero symptoms but a couple of cavitary lesions. I feel fortunate to have access to a MAC specialist in Atlanta. And also glad to have found this group. Started Ethambutol so hoping no side effects - at least until the other two...

@atlantabec you mention you will eventually be on three antibiotics, I am assuming the standard “Big 3.” Is that daily? Or three times a week? Also given your cavities, has your MAC specialist raised Amikacin with you? I ask because with cavitary disease the guidelines recommend daily Big 3, with a few months of Amikacin in the beginning. My local ID doctor gave me an initial drug protocol recommendation that did not match the treating guidelines. I will be going to NJH soon for another opinion, but am curious in instances where others here have been recommended drug protocols by their doctors (preferably MAC specialists) that may not match the treating guidelines and the reasoning for that. I do think the Guidelines are just that, guidelines, and I think the experience of the specialist is as important, if not more important (to me anyway). Unfortunately my local physician is not a MAC specialist and his reasoning for not following the guidelines did not makes sense to me. Obviously where the standard recommended regimen is not tolerable, different approaches need to be evaluated and investigated. For others who may be reading this, I am not talking about those instances. But in an initial treatment scenario where there are no issues with susceptibility testing, if you have cavity disease and your MAC specialist recommended something other than the daily Big 3, with 3 months of IV Amikacin, I would be interested in hearing what the recommended protocol is and the reasoning given for diverging from the treatment guidelines. Thanks.

Hello! I am 34 and I was also just diagnosed with MAC cavitary lung disease. Process started in in September when my symptoms of wheezing and crackling in my chest started. CT scan and Xray showed a large 5cm cavitary hole and suspicious for TB. Ended up being negative for TB, took months to get the sputum tests back to show all 3 positive for MAC. They preformed a bronchoscopy to double confirm and ensure no secondary bacteria or cancer cells. They wanted to start me on IV therapy but with the risks we are starting on oral doses of antibiotics but that Dr is saying 2 years of this which sounds insane. And there is a consideration for removing a portion of my lung that is diseased because the size of the hole.Going to find a specialist to get a 2nd opinion.

Welcome to our helpful group. Can you tell us a bit more about your lungs - have you got bronchiectasis, asthma, Cystic Fibrosis or another lung condition? Do you have a history of pneumonia or other lung infections?

If I were you, I would certainly seek a pulmonologist experienced in treating MAC - this is a rare infection, and extremely rare for someone your age, so it is important to get the best help possible to beat the infection and learn how to avoid reinfection.

The hole in your lung is referred to as a cavity, and these sometimes close up when the infection is controlled, so unless it is particularly severe, or the infection is isolated to only that area, I would hesitate to do it before trying antibiotic therapy.

Finally, yes, 18-24 months is the typical length of time to take the 3 or 4 antibiotics for MAC. Mycobacteria are very slow-growing, and good at hiding in biofilm where they are difficult to kill.

This discussion contains lots of good links to information about MAC:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

Thank you Sue. During childhood my typical colds would usually turn into bronchitis but this subsided in my adult years. I have always had more of a productive cough or laugh. Seems like there is always some sort of phlegm there. They have done some breathing tests that show I don't have asthma and never had problems for the 16 years I played competitive sports. After the broncoscopy they also stated I have pneumonia which sounded like a result of the MAC. When I had my daughter in 2018, they tested me for being a carrier of cystic fibrosis which was positive. However CF seems very serious and that I would know by this age that I have it.

From what has been shown on the CT scans the hole in my right upper lung is very large and they are worried the antibiotics will not be able to get in there. The surgery was also discussed as a way to decrease the amount of treatment time.