How to understand Sputum/Bronchoscopy and CT changes over time

Thanks for your great question. I'm very interested in the answer others give. I've been taking the big 3 since December 5 & tolerate them ok except I'm wondering about vision changes
I also have Valley fever showing some improvement after 1 year on Fluconazole. My doctor stopped that medication a week ago because I've been living with the rash from "H---" for almost 4 months. I am almost rash free & so happy. Lastly, I can't get enough sputum for a lab test & don't want another bronchoscopy so wondering how I'll know how I'm improving. Looking forward to answers you receive.

I have had these same questions too! I can barely get any sputum for a sputum culture. Broncoscopies are rather expensive. I have nodules in my lungs too. Wondering how the CT scans show improvement. Will the nodules gradually go away?

@scratssun & @kssunflower Hello, I understand your concern about more bronchoscopies - a CT can show whether the signs of infection- cavities, nodules and opacities- are getting better, worse or staying the same. However they cannot tell what is infecting your lungs. For that you require a sputum culture.
Now what? Is your doc making a recommendation?

Thanks, Sue, for your answer. I will schedule a broncoscopy when I return to AZ if I'm still unable to get a sputum sample.

I talked today with Infectious Disease doc about this - yes, NTMs are common in the natural environment and may contaminate lab specimens. Additionally, the presence of NTM bacteria doesnt necessarily mean MAC lung diseases (depending on other things of course, CT scan, patients symptoms etc). And the presence of consistent symptoms cannot necessarily distinguish between transient infection and true infection. I was surprised to hear that - maybe a bit of good news for some?

It doesn't surprise me. My original pulmonologist told me years ago that 3 sputum samples, taken on 3 days should be submitted. This minimizes chance of contamination either by patient or lab. Also if the cultures grow different varieties, it lends credence to possible contamination.
He and my ID doc both used combined criteria for the decision whether to treat - bacterial load, CT scan and severity of symptoms. One must use a lab that measures bacterial load in the specimen as well as determining which Mycobacteria it is and antibiotic susceptibility.
There is so much to consider beyond antibiotic therapy. Controlling my asthma and doing airway clearance has been a lifesaver for me.

Thank you for sharing your Doc's comments. This is consistent with what I've suspected....hard for the docs to know for sure whether someone has an active infection, and how serious/extensive it may be, due to all the variables. The most frustrating part for me is having any sense of certainty if/when my infection is resolved and I can start the 12 months post conversion phase.

If possible ask for a “one time use disposable bronchoscope “ be used. Less chance of potential infection from what I’ve read.

I was diagnosed with Bronchiectasis and there was also (allegedly) some type of bacteria detected after having constant bronchitis events in November 2022, December 2022 and February 2023. I had an CT scan with all kinds of lung issues including GGO, detection of bronchiectasis and likely some type of MAC. I also provided sputum samples. Initially, H-Influenza was detected, and after begging the doc for an antibiotic, he relented and I was put on doxycycline for 10 days. Prior to that, I had been living with fevers every day from November 2022 to June 2023 when I got the antibiotic. Also, my cough sounded like a plugged up drain, and I was bringing up disgusting sputum (color and taste). A culture test 8weeks later showed up “abnormal” in my portal. I was sent to the ID who was all set to start me on the big 3. I asked her specifically what are you treating me for. She looked in her records and saw that the specimen wasn’t finished being processed. She assumed that because pulmonologist sent me to her, I had been diagnosed with MAC already. She was embarrassed and called the lab to determine when the final diagnosis would be. 2 more days. So she called me then and said it was bacteria gordonae. We don’t treat that. Well, after this experience, with no follow ups after the H-influenza or CT scans requested or sputum samples requested I decided I should go to the Mayo Clinic. Tried to go to Phoenix, but they don’t treat Bronchiectasis there - Rochester, MN or Jacksonville, FL. I chose Rochester. I was there 2 weeks ago. I had all sorts of tests including CT of chest and sinus, Esophogaus - barium scan, rhinoscopy. Yes - they found all kinds of problems, including the the Bronchiectasis has spread as well as the likely MAC (infection) spread since last year. They said “moderate to severe” on the scan. In any case, I’m supposed to be sending 3 sputum samples to Mayo. I’ve sent two. I can’t seem to cough up any sputum now, even though I have the same sounding cough as I have had for a year. Any ideas for how to produce for a sample? I’m supposed to return to Mayo in 4-6 months. The two samples I’ve sent have come back “negative” for the stain, but I guess they’re being cultured too. I do nebulize, but I don’t cough up anything with that either. Thanks in advance for any advice!

Hi Karen,
I’m sure if we put our heads together, we can come up with airway clearance suggests.

*What do you do for airway clearance?
*Can you go somewhere to get an induced sputum sample with 10% HS?

I had 3 negatives but my CT scan looked suspicious for MAC. It was identified by bronchoscopy.

M. gordonae is often a lab contaminant and not treated. It might not have come from your lungs.

Best,
Linda Esposito