Misdiagnosed Mac

If you'd like to track down the "missing reports" scans etc, contact archival records the medical facility and put in a written request. Does your place use Epic? If you haven't looked in the historic records in your chart, maybe they are hiding there?

Nebulizing 2x day with 7% saline and lung clearance is the gold standard for bronchiectasis. Make sure your pulmonary team has experience in treating MAC. This site is FILLED with practical advice as there are lots of those who have experience with MAC/NTM. Even though NTM/MAC is common to find here, it's otherwise rare.

Hi thanks for your response. I did put in a request. It’s just strange After Mac diagnosed and hospital stay the 2019 reports vanished off my portal. The other 2 broncosopy on on there 22 and 23. Could the cultures been wrong. Not enough sputum or contamination. Since hospital doctor has been overly compliant with everything. I just feel I smell a rat. Lol

NTM's are extremely hard to diagnose and treat. I've been in this game for over 5 years with many, many Doctors and facilities (including NJH) and they are still guessing but are keeping me alive and active. Concentrate on getting better, not on revenge. Go to another pulminologist that does cover NTM's ans add an ID Dr if you don't have one.

@tracy111869 I would like to welcome you to Mayo Connect and second Rick's recommendation, "Concentrate on getting better, not on revenge." You are going to need all of your strength and energy to get to the right treatment and get healthy again.
Many, many of the posts in our support group begin with stories like yours or mine - I was diagnosed with "intractable asthma and chronic bronchitis" for 5 years before a sharp-eyed radiologist pointed out the bronchiectasis and "probable MAI" on an x-ray. At that point, I couldn't walk across the street without stopping to cough and catch my breath!
As for sputum cultures, they can be spotty - I had 3 samples in one time - one grew MAC, one grew, one grew pseudomonas - same day, same lungs!
Do you have access to a pulmonologist with experience treating MAC?

I am sorry you experienced such incompetence. It doesn't surprise me at all. I have stories I could tell you that are similar.
All you can do now is find a good pulmonary dr who is educated with MAC, it's a specialty. Most of them don't know anything about it. I've run into that also.
I see Dr. Colin Swenson in Atlanta, I believe he treats out of state people via telehealth. Where do you live.?
I went to National Jewish Health in denver first, but I live in Georgia so now see him.
If I can help in any way, feel free to message me. Bon

I understand the frustration. I was going to infectious medicine doc and realized I had had 9 lung infections in 1 year. He sent me to pulmonary doc which said wasn’t my lungs then all the other specialists I went around and around with. I had CT scan done in 2009 and radiologist said it looked like MAC but no one was believing it. The saga goes on and on until in 2015 I finally went to Emory and within one minute the doctor told me he suspected MAC. 2 1/2 years of the big 3 and still have it. I moved to Alabama and needed a good pulmonologist. There is a list of pulmonologists that specialize in MAC that I got from this group and going for first time next month. I can think about it and get upset but that doesn’t help. MAC doesn’t define me. I have a full active life and thankful for each day. Wish you the very best. ❤️

I agree concentrate getting better. The thing that pisses me off is that the cat scan from 2019 said atypical mycrobactiera. That was the heart doctor that sent me for it same hospital. Pulmonologist missed it and went by ntm culture only and put me on batrum and levewuin when I should have been on ethambual and ariomizan. I suffered for 3 years spitting up blood losing weight couph night sweats and my lungs getting worse. I have been on yhe 2 drug regimen since November 2022 and all good now.

Thank you. I hope you feel better.

I thought I had the right doctor. Unfortunately not just missing my diagnosis of mac in 2019 she in 2022 believed my lung condition was associated with cystic fibrosis. I am a carrier but do not have the disease. You need 2 genetic parents to have it. So basically since 2019 till October 2022 I was being wrongly treated make my lung condition much worse. I tried to explain to the doctor upfront in 2019 I was a 911 first responder abc had lung couping since then. She did not go by history that I probably got brocistasis from 911 but a genetic problem. Just a very frustrating situation. Thank you

My doctor says that while I don't have MAC he thinks I am colonized by it. It showed up in my most recent labs. I have bronchiectasis and asthma and nebulize with levalbuterol and 7% saline daily. Since I am colonized does that mean I will eventually get it?