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

Posted by jkin467 @jkin467, May 5 2:53pm

I was diagnosed with MAC Lung disease 4 years ago due to findings on CT Scan and sputum cultures. However, recently hospitalized with pneumonia and a different Pulmonolgist did thorough research on my case and believes that I was misdiagnosed and don't have MAC. Just wondering if anyone else has had this to happen? Luckily, I chose not to get the extensive antibiotics treatment because I felt the treatment was worse than the disease. Would appreciate knowing if others have experienced this.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

becleartoday | @becleartoday | 3 days ago

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

jkin467 | @jkin467 | 3 days ago

In reply to @rstel7272 "Have you considered an NTM clinic like at NJH, Mayo or one of the others?" + (show)

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.