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

I’m I’m sorry, did you ask me another question? Linda

After reading the responses on this Mayo MAC patient's personal experiences, I have learned more than in the four years I saw the local pulmonolgist.
Apparently, not all pulmonolgists are experienced in the diagnosing of MAC lung disease. I just accepted what the first pulmonolgist I saw told me.
When I was recently hospitalized for pneumonia, the hospital pulmonolgist reviewed my records and he didn't think that I have MAC and he was going to do additional testing, however, he was not in my insurance network so I got another referral from my PCP to see a different pulmonolgist in July.
Hopefully, he will be able to review all my records and tell me what I need to do.
I'm grateful for the responses and information here as now I feel more enlightened about this disease, thanks to Mayo.

Pathology from your lungs is sent to a laboratory. My doctor only trust the laboratory at national Jewish. My bronchoscopy was done in the state of Tennessee but sent to national Jewish each time. It takes 6 to 8 weeks to grow the mycobacteria.
The CAT scan is simply a picture of the lungs that shows the damage

I agree that it is an extremely impactful, horrible disease. But my first CT scan looked so bad the radiologist described it as likely metastatic disease and recommended a pet scan, which I had. I was so scared, because basically the radiologist thought it could very well be cancer and they were looking for a primary tumor. I was very thankful - to say the least - not to have lung cancer! MAC Lung disease won't kill and there is a lot you can do to help yourself. There are many practical things such as only drink water you boil a minimum of 10 minutes because that's how long it takes to kill the bacteria. You don't take showers because the aeration of the water makes it easy to breathe the mycobacteria. Really make a huge effort to cough and keep your airways clear. Sleep with your upper body elevated. I take NAC supplements and swear by them. There are just a lot of things you can do and the most important thing is to exercise. One doctor told me use your lungs or lose your lungs because that's when they clean themselves.

I was diagnosed with MAC and Bronchiectasis in Oct of 2022. I had a bronchoscopy and CT scan. I was started on Clarithromycin, Ethambutol and Rifampin. I was on those meds for a year and a half. I had one neg sputum test during that time, and 2 positives. My pulmonologist told me the MAC bacteria had become resistant to the antibiotics and he wanted me to have a piccline put so I could do IV meds for a month. I started Amikacin and Imipenem Cilastatin, in June 2024 and just finished those. I had a new CT ( I've had 5 total so far) and just saw a thoracic surgeon at the request of my pulmonologist. The surgeon told me that my CT, that I had done 2 days after finishing my IV drugs, looked worse that the one I had in Jan of this year. I have a cavity that has grown in size, that he thinks that is harboring and growing the bacteria and the only way to get rid of the bacteria is to take the cavity out by doing a lung resection. I am 69 years old, have been active through all of this - I walk at least 3 miles a day, work out at least 5 times a week, play tennis 4 - 5 time a week, ride my horse and do lots of yard work. (wearing a mask now!) I only felt sick when I first started the meds, which we adjusted and I was fine after that. No ill effects of the IV drugs either, even though my doctor said they were very toxic! I don't know what to do, If all of these meds have done nothing, is surgery the only way to get this taken care of?? Should I get another opnion? Has anyone had surgery due to MAC?

If I were you, I would try to get another opinion. However, I now have seen several different pulmonolgists and they all seem to have different opinions. It's really hard to know what to believe. The one pulmonolgist that does lung cancer surgeries had suggested possible removal. He wasn't in my insurance network so I didn't really get information regarding removal.
The new pulmonolgist I recently saw following my hospitalization said this wasn't possible. I was confused how their opinions were so different. However, I'm 83 and have other medical problems and decided to just continue to not have any real treatment for MAC and just have treatment for COPD.
If I were your age and in your physical condition, I would definitely try to find the best treatment possible.
Good luck finding your answers and treatment in your recovery.

@lbabbitt It's great you keep active despite NTM/MAC. What about airway clearance? Some have been able to clear MAC with airway clearance alone. I do not know for sure but by the time it gets to cavity state that may not be possible. Still airway clearance will help bronchiectasis from progressing.

In April 2024 there was a fabulous presentation "NTM Lecture Series for Patients and Families" presented hybrid from NJH. Cavities and their treatment were discussed. There was a segment on surgery (VATS) by Dr. John Mitchell (Colorado) but it does not look like it's contained in the link. Maybe because the segment was prerecorded. Anyway, you'll learn a lot about what your options are in this youtube recording of the session.

@rstel7272 Rick has dealt with cavities. I’m trying to tag him for you.

Thank you!

If he doesn’t respond, you might try using search for cavities in this group and also starting a new discussion asking about cavities with that in title. I know there are a few here. I don’t always read threads with a title that hasn’t impacted me. You have received good info on Mac already here. Cavities are sometimes treated more aggressively from what I’ve seen here.