Anxious 23 year old male with MAC

This is going to be a long post, and I appreciate anyone who is willing to read it all. I am anxious and scared and am hoping to gain some insights from the expertise on this forum.

I am a 23-year-old male from NYC. Relatively healthy but with high blood pressure and sleep apnea. History of asthma and severe food allergies and environmental allergies but no other lung disease.

I have always thought I had asthma and have been on the max dose of inhaled corticosteroids my whole life. Advair 250/50. About 9 months ago, I began experiencing symptoms of asthma exacerbation when it was usually well controlled. I went to my allergies and he put me on a 1 week course of prednisone where I felt a bit better but symptoms returned. I saw another allergist in person who switched me to Trelegy 200. No improvement in symptoms (which was coughing up mucus, difficulty clearing mucus, shortness of breath, feeling like breathing through a straw, and feeling like there is pressure on my chest). Allergist suspected it was silent acid reflux (LPR) and put me on omeprazole and referred me to a LPR specialist in the practice.

No improvement with symptoms and the acid reducers; ENT put a scope in my nose and throat and said that I had silent acid reflux. I followed the acid-reducing diet and was referred to GI doctor who did an endoscopy. Endoscopy was fine with no signs of reflux and they also did a manometry test and PH imedpance test which finally concluded that I did not have LPR. The pH impedance test was done off PPI and showed normal acid exposure of 3.4%, with 36 reflux events. Manometry was normal. There was positive symptom association with burping.

At the same time I was seeing a pulmonologist at Mount Sinai who was supposed to be the best. We did all the standard tests. Chest X-ray, pulmonary function test, methacholine challenge test, pulmonary cardiac stress test on a bicycle, nitrogen test, blood test etc. Everything came back negative. FeNO was also normal. The pulmonologist said I did not have asthma since my methacholine challenge test was negative. Confused since I was told I had asthma my whole life and felt symptoms.

Chest CT scan was also done in May. No air trapping, no bronchiectasis, everything looked normal. CT scan showed no signs of lung disease. The CT was not a dedicated high-resolution CT with expiratory views, so subtle small-airway disease or very subtle MAC-related changes could not be completely excluded, although my current pulmonologist reviewed the CT and said that it looked fine.

Was finally referred to another pulmonologist at NYU. They did a sputum culture test. AT the same time, I began seeing a special allergist who put another scope in my nose. He told me that my adenoids were severly infected and draining mucus and causing everything to be inflammed in the back of my throat. He put me on Augmentin and prednisone. I felt better for the week I was on prednisone. However, when I stopped the prednisone, symptoms returned. I saw the allergist again who put me on a nasal rinse twice a day (gentamicin and mometasone) and said I may need to have my adenoids removed. I have symptoms of stuffy nose, blowing mucus, and congestion. The mucus production was decreased once starting the nasal rinse but I still had the chest discomfort and difficulty breathing. Saw another ENT who put a camera in my nose and said that my adenoids didn't look inflammed anymore and it all loks good. Also had a sinus CT scan performed and that showed no sinus disease or anything abnormal. Still experiencing symptoms of stuffy nose. I was also evaluated for vocal cord dysfunction and was told that this was ruled out.

At the same time, the culture results came back. I was initially positive for Legionaires, H. Influanzae, and nasal colonization of meningitis (I am vaccinated). The Augmentin supposedly cleared those bugs but I also tested positive for mycobacterium avium intracellulare complex from the sputum culture in July.

NYU pulmonologist wanted me to do a 3-day sputum induction test to see if the mycobateria would culture again. I did that in August and it just came back postivie again. Acid fast Bacilli was negative in both cultures. The first MAC-positive sputum was collected on July 1 and the second was collected around August 19/20, so they were approximately 7 weeks apart. Both cultures were acid fast bacilli smear negative. A 3-day induced sputum series was performed in August.

To conclude, I have ruled out all other possible causes of my breathing symptoms. I am seeing the pulmonologist again in October to discuss the results but he called me and said that I am likely positive for MAC due to the 2 positive culture results and symptoms, however, he said that most people don't need antibiotic treatment and that we will discuss what to do. He also said that the CT does not look like there is anything significant there, although the CT is not technically perfect enough to completely exclude subtle MAC disease.

I am very worried, I am so young and from my research online MAC mainly infects those with compromised immune systems and other lung issues which I don't have. I don't understand how I could have been infected with MAC and I'm worried that the only optino to solve my breathing issues is to either wait it out and continue suffering until the MAC causes damage seen on a CT to start antibiotics or start the antibiotics now and hopefully clear it. However, if I got infected with MAC as a healthy 23 year old, wouldn't it just continue coming back as I get older?

I am worried about the long term side effects of this. The antibiotics would interact with my blood pressure medications (which I can only take a few since I have allergies that prevent me from taking beta blockers) and I'm worried I won't be able to handle the side effects.

Can MAC be cleared without antibiotics in someone young like me? The pulmonoligst at Mount Sinai literally told me that there is nothing she can do and she suggests just waiting and said that there was no reason to culture for MAC because even if I had it she wouldn't treat it. I'm getting conflicted opinions and don't know where to turn.

My biggest question is whether it is actually possible for MAC to be causing significant respiratory symptoms at this stage even though my CT does not show obvious lung disease. If MAC could be contributing to my symptoms, how do doctors distinguish that from incidental colonization, and would treatment ever be considered before structural lung damage appears?

I also want to know whether, given my age and the fact that I have now had MAC isolated from two separate sputum cultures despite no obvious bronchiectasis or other structural lung disease, I should be evaluated for an underlying predisposition to NTM, such as an immune deficiency, cystic-fibrosis/CFTR-related disorder, primary ciliary dyskinesia, or another condition.

I am also wondering whether a dedicated high-resolution CT with thin sections and expiratory views would be worthwhile now, or whether repeating imaging several months after the May CT would be useful.

If treatment is not appropriate now, I would like to understand what should actually be done to determine what is causing my breathing problems and what findings would cause doctors to switch from observation to treatment.

I am very worried because I am only 23 and have never had a significant lung disease other than what I was told was asthma. I'm getting conflicting opinions and don't know whether I should be pursuing treatment, observation, another NTM specialist, or additional testing. I'm especially concerned about the possibility of either unnecessarily taking multiple antibiotics for a year or, on the other hand, waiting until there is irreversible lung damage before treating something that may already be contributing to my symptoms.

My biggest questions are:

1. Can MAC cause significant respiratory symptoms when CT imaging is essentially normal?

2. Do two separate positive cultures make it likely that MAC is clinically meaningful in my case?

3. Is treatment ever appropriate before obvious structural lung disease develops?

4. If treatment isn't appropriate now, what should I be doing to determine what is actually causing my breathing problems?

5. Given my age and lack of obvious underlying lung disease, should I be evaluated for an underlying predisposition to NTM?

6. Would you recommend getting a second opinion from another NTM/MAC specialist?

I appreciate anyone who has experience with MAC/NTM or a similar situation sharing their perspective. Sending thoughts and prayers to anyone dealing with this and I appreciate any advice one can give.