Anyone been mistakenly diagnosed with MAC Lung disease but not MAC?

Interesting.
Have you had symptoms that made you (or your doctor) think it was MAC?
I'm in a similar situation - wondering if the MAC isolated in sputum and bronchoscopy indicates that, yeah. the bacteria was present, but not that is MAC lung disease. I dont have any symptoms. And same, not choosing the antibiotics at this point, sounds like the treatment worse than the disease.

My CT scan in February was less than a week after I was sick w the flu, coughing up stuff, stayed in bed, - so 'the infection' my doctor pointed out in the CT scan could have been residual effects from being sick. The only way to know is with another CT scan to compare, see if infection is still there, worse or better....

Similar situation for me: I was diagnosed with BE and MAC 2 years ago. In Dec 2023, after a major hemoptisis event, the I.D. doctor told me I absolutely needed to start the big 3, I tried Azythromycin and Rifampin every day for 10 days, did not tolerate them, so I stopped them and took an appointment in a different hospital with a new pneumologist experienced in MAC infections. He told me my CT scans did not indicate MAC lung disease and that everybody has MAC, Aspergillus and Pseudomonas in their lungs (like I do). He put me on airway clearance with 3% saline and asked me to continue exercising hard with every day cardio for 30 minutes. Which I do. Of course I am a bit nervous that MAC lung disease could develop since I have BE, but I am also hopeful that new treatments other than antibiotics are on the horizon. IRINA-1 sounds like it could be a game changer. My new lung doctor told me the most important line of defense against MAC lung disease is daily cardio, so I do the bike or elliptical religiously. Fingers crossed.

Typically the best way to diagnose MAC is through a bronchoscopy. The ct scans only show if any damage yet. I grew a 10 cm cavity in my upper left lung within 30 days.

If you have repeated sputum cultures and you continue to grow MAC, most bronchiectasis specialists would consider that to be an infection. Then, it is up to you to decide whether or not you want to go on treatment. It would be based on if you have cavities, your symptoms, and progression of your CT scan.

Please know that there is a clinical trial for two antibiotics versus three. It’s been ongoing for years, has close to 450 people enrolled and they are looking for another 20 or so participants to complete the trial.

Best,
Linda Esposito

Hi Linda,
Do you know what are the antibiotics dosages ? I was also diagnosed to Mac Lung disease on 12/22. I have not started the antibiotics yet. My second cat-scan ,7 months later showed the Mac has moved to a different location and less amount of Mac was seen. First 5 months of this year was very though, I keep getting lung infections and I was given short term antibiotics every month. Some of my sputum test results are negative and some positive for MAC. I was told to start 2 antibiotics with high dosage, but my another doctor thinks the dosages are too high. So I took one medication and I was told to stop so they can figure out what is the right dosage for me. I look really sick and this condition has really impacted my life. Some days my mouth taste really bad and mornings are worse for me. There is a new cat-scan with less radiation. I am so lost. 🙁

Good morning Suzanne,

I’m so sorry you’re not feeling well. I strongly suggest you reach out to the researchers at the Oregon Health and Science University. They are the principle investigators of the MAC2v3study.org. This is the study where you are randomized into a group with either two drugs or the standard three. You can be part of this study even if you aren’t able to go to a study center. Over 450 people have participated and they’re looking for another 20 or so to complete the study.

There are international guidelines for MAC treatment regarding dosages. Your doctor should be able to reach out to National Jewish Health with questions. If for some reason he or she is unclear, you might want think about going there or to Mayo to see doctors who specialize in the treatment of NTM disease.

Are you doing airway clearance? Sometimes when some of our cultures are positive and some negative it could indicate a light bacteria load. And with enough airway clearance and exercise, we might be able to eradicate the bacteria without antibiotics. But of course you would need to be watched very closely to make sure your disease does not progress. Have you met with a respiratory therapist?

Please let me know if you need any more information, Linda Esposito

I was thought to have it for several months due to cough and CT’s, but bronchoscopy results were negative when I went to Mayo.

Penn doc thinks I could’ve had it and cleared it or bronchiectasis is due to my sinus issues.

You need a solid confirmation that you do indeed have MAC and a solid treatment plan. You might need a pulminologist with some more Mac experience

Had solid confirmation from sputum tests by pulmonolgist who diagnosed MAC Lung disease. He referred me to an infectious and contagious specialist who offered me the extensive antibiotics treatment but informed me of the dangers of this treatment and I decided against taking the only treatment available for MAC Lung disease. My PCP recommended that I take the treatment but I believed that the treatment was worse than the disease, therefore, I did not do the antibiotics treat. I continued to see that same pulmonolgist for almost 4 years, until he left for employment elsewhere. He referred me to another pulmonolgist, since he was leaving.
I saw the pulmonolgist he referred me to once and he retired. My next routine appointment, I saw a different doctor and she did the most thorough of all my records and she ordered more sputum cultures because my condition was not in line with someone who had MAC Lung disease for 4 years. The repeat sputum cultures didn't show the bacteria that had previously been found on sputum cultures. So, I was shocked by these results but extremely happy.
I haven't been able to see a pulmonolgist since this discovery but will be seeing a different pulmonolgist next month.
I was just curious to know if this had happened to others.

Have you considered an NTM clinic like at NJH, Mayo or one of the others?