Connect
Sputum Test submissions and outcome results
August 2022 diagnosed with BE via C Scan...no sputum test suggested or understood that I should have it tested.
Oct. 2023 self-referred and diagnosed with MAI while at NJH. Sputum tests at NJH indicated low load of MAI. I was told to do watchful waiting by NJH pulmonologist.
Began and doing Nebulizing and all Air Way Clearance methods since Oct. 2023.
I am still on and continue with watchful waiting.
Once, recently, in 2025 and now in 2026 Sputum Test results have come back twice indicating negative for bacteria growth and all other came back positive for MAI. I just received today...no bacteria growth.
I wonder if it is there in the lungs, the MAI, but in such a small amount or down deep in the lungs, hiding and will sometimes pop its 'head' up and other times so little that does not come up and therefore does not show in the testing ???? I have been sending the sputum for testing nearly every month to stay on top of what is or might be there or if to see there is anything new.
So without antibiotics due to original low load MAI I thankfully have felt fine all along and weight is stable.
Do many of you, others, have sputum test results come back positive, negative, positive, negative results?
Have any of you had this experience and has a doctor given their thoughts to you about why this can/does happen?
Barbara
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@annagh If I understand the trials correctly, this will be a game changer. The literature I found searching on Google Scholar is of preliminary trials, the most detailed occurring in 2022. Unfortunately recent research seems to be going in a familiar direction - focusing on the far more common M. Tuberculosis.
I looked for clinical trials of the test and found that there is possibly one in progress in Oregon.
Did your doctor provide any additional information?
-
Like -
Helpful -
Hug
1 ReactionI do mine every 3 months. Pos in 6 days. But used to be 4 days. So getting some progress.
-
Like -
Helpful -
Hug
1 Reaction@westcottkm3040
To test for MAC?
@sueinmn I am in the trial at OHSU, and very hopeful that this will be helpful to all of us.
Protocol Title: CRISPR detection of circulating cell-free Mycobacterium avium complex (MAC) DNA for rapid diagnosis and monitoring of MAC pulmonary disease (CRISPR) and Mycobacterium avium complex pulmonary infection: immunologic and transciption signatures of disease and treatment response (IMMTR)
Protocol #: NTM CRISPR IMMTR
Sponsor: NIDID (National Institute of Allergy and Infectious Diseases)
Principal Investigator: Kevin Winthrop, MD, MPH
Institution: OHSU
Purpose: The purpose of the study is to learn more about how CRISPR technology can be used to detect MAC in your blood and improve diagnosis and monitoring of MAC pulmonary disease.
Anna
-
Like -
Helpful -
Hug
4 Reactions@lynncat Yes, 4-6 days is common, but that is just the original gram stain on the slide. If further testing is warranted, they still have to do the full, longer culture process.
-
Like -
Helpful -
Hug
1 Reaction@westcottkm3040 Thank you for your response.
Yes to test for MAC/MAI.
My sputum for testing takes the full six to eight weeks until I get the results. As I said above it has gone from negative to positive to negative in the last few submissions. Each submission was at least a month or two apart for the last sputum sent in.
So interesting to hear and know of the experience of others.
Hoping progress continues for you.
Barbara
@mariegrace If you cannot take antibiotics, nebulizing with 7% saline is a form of treatment. Do you know the bacterial count? Have you had susceptibility tests done? Do you have cavities? And are you nebulizing 2/daily with 7% saline. I have never heard of being diagnosed with MAC and it not being monitored. When I went to NJH, they had done a CT and sputum cultures to test for Susceptibility with a number of antibiotics along with bacterial counts. They did not recommend antibiotic treatment for me since bacterial count was low and CT's stable. However, in situations like mine-they "watch and wait". I send sputum samples every 2-3 months to NJH and get low E CT's every 6-12 months.
-
Like -
Helpful -
Hug
2 Reactions@annagh Sponser is NIAID.
Yes. Last year I did a succession of 3, 1 every week. Some came back negative and 1 positive for MAC. My ID doctor said “they” refer to test results like this as smoots, dirty cultures. She said to dismiss it.
BUT, 11 months later my culture was full of pseudomonas and other bacteria. Was it there in the “smooths” culture?
-
Like -
Helpful -
Hug
1 Reaction@kathyjjb I have tried to find in a post to see if you mentioned how long you have been on 'watchful waiting' since you were diagnosed with a MAC at NJH and have a low load infection. Mine continues to be MAI.
As you know I have had a low count/low load of MAI from 2022 till now and I keep myself on 'watchful waiting' . My PFT is good, low load of infection and C Scan in November said worse plugging in lower lobe. I think, hopefully, I cleared the lower lobe due to what I brought up a month ago...hope so. I want a C Scan in April to see what is what. Other areas had improved per the C Scans.
Questions: How many times have you been to NJH since you started with them...in terms of their helping you to keep a watchful eye on it all, 'watchful waiting.?"
I take it you do not have mucus plugs showing on the C Scan, low load of infection and PFT is good?
Barbara