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
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@mariegrace I'm so sorry to hear about the loss of your husband. It's especially hard to lose your spouse when you are also contending with a chronic disease. Sending hugs. Roz
@toni4501 I was in Denver at NJH in Oct. 2023. Main campus in Denver is where I was for the week long visit with all the testing, Jackson Street.
Barbara
I haven’t had any trouble with my labs so far. I’m sorry that many of you are frustrated. I’ve been diagnosed with BE and MAC October 2024. I’ve done sputum tests at UNMC and Mayo. I do refrigerate everything immediately and then use an insulated bag with ice pack for travel to the lab. They typically run the AFB smear first with results back in 24-48 hours. My smears are always negative. They then run the culture on the same sample which takes about 6 weeks. My cultures are always positive meaning my culture grows MAC. I believe that if the smear is positive that indicates the presence of a higher concentration of bacteria and the need to treat more quickly. I began treatment with the big 3 antibiotics about 5 months ago since my symptoms increased and my CT showed progression. It’s my understanding that I would have started treatment sooner if the smears were positive. If you have more questions I would discuss with your doctor. Hope this helps.
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3 Reactions@sueinmn doesn't it take 6 wks to get a sputum diagnosis? or is there somewhere where one could get it done faster? I really hate that long wait
@akron3 My understanding is that the quicker the results the worse the amount of bacteria is and the type/strain of bacteria.
I'd rather wait in hopes of ....no early news is good news.
I understand, however, how we wait on pins and needles for the results.
Sue may have to correct me on this but that is my understanding.
Barbara
@akron3 Sometimes there just isn't a shortcut!
Here is the testing sequence and why it takes so long. Let's begin with the caveat that most strains of mycobacteria a very slow-growing, many that may be present in our cultures do not require treatment, and those strains that require antibiotic therapy are "picky" - only a few drugs are capable of killing them.
Sputum sample is produced, then stained in the lab to see if there are suspected mycobacteria present. If the result is "positive" the sample is then stabilized and sent to a specialized lab for further testing. Some labs send their samples to a central location for processing, some are sent to specific commercial labs, and some are sent to the lab at National Jewish Health (NJH) in Denver. As far as I know, all are reliable, but only NJH and a few other locations have the capability of reporting the count (or density) of the bacteria, which, along with other symptoms, can help the doctor in determining the severity of infection.
The sample is place on several culture plates and incubated for at least 4 weeks to see if a mycobacteria grows. It is then examined every few days for up to 8 weeks to see what grows.
If something grows, a technician examines the sample under a microscope, or sometimes with genetic tests, to see exactly what it is.
Once that is determined, specific antibiotics are applied to the slide(s) to see which ones kill the bacteria, or al least keep it from growing.
So, as you can see, the "bug" runs the show, and determines how long it takes to get results. When I was first diagnosed, the infection was so massive that it only took 4 weeks to determine I had MAC, and one more to determine which meds to use. The last time they grew my culture all the way, it took 8 weeks, and the only bacteria that grew were of a variety not treated.
All that said, research is underway to find a faster, but still affordable way to speed up the process. This is only beginning clinical trials, so we are probably looking at a few years...not months...before we see a change.
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2 Reactions@sueinmn Sue...if you are comfortable answering this.
Background Info: As you know I have not started the antibiotics and overall I am doing fine except for having that sensation of mucus (I assume it is mucus) stuck in my throat that is so annoying that I clear almost all day long. The only med or medical prescription I take/use is the saline for nebulizing.
I have had a couple sputum tests indicating negative for bacteria, positive for bacteria, negative for bacteria. I know it can go back and forth and probably for different reasons.
I like to send them monthly to stay on top of what might or might not be happening...my way of being proactive in my mind.
The local pulmonologist, so it appears at this point, will not allow an open order for a monthly submission as I have had with Tyler. I am in discussion with him about it all at this point. He apparently feels that if I won't do the med's there is no need to send sputum as I am requesting. We have not discussed as yet how often he will approve.
My question: How often do you send sputum for testing and what do you know about when it is necessary to send the sputum monthly?
Barbara
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2 Reactions@sueinmn I am curious to know how you get results from Quest in 5 days, or 24 hours at home. Is it just the smear test? What are you testing for? I do sputum samples monthly and it can take weeks for when they grow a culture to find MAC, but of course the smear test is quite quick. My smear test is almost always negative, while the culture has come back positive only once (even though the smear was negative).
Thanks!
@eileen86 Sorry, that was a different test that I must have every 3 months. When I am away from my home state when it is time for the test, I go to a local lab provider - usually Quest. I then see the results on their patient portal. When I have this done at home, the results take 24 hours, but when I went to Quest this time it took over 5 days - when I asked why they had no explanation - I could almost hear the person on the phone shrug when I asked. 🫤
I never get sputum sample results in 5 days, though if the slide tests are all normal, that is the end of that test UNLESS my previous test was positive or I am symptomatic - then they send it on for the culture to be grown out as a precaution.
@sueinmn Dr Winthrop at OHSU told me they now have a blood test that can detect the DNA of MAC, so soon they will be able to monitor the presence and amount of infection without the sputum samples which can be hard to get, and come places in the lungs which may or may not have MAC, as it is not necessarily evenly distributed. I just started on the two drug treatment and agreed to participate in a study where they are testing to see if they can detect the decline of MAC via the blood tests. If this works it will be a great thing for all of us! No more struggles to get the right sputum sample and long waits for the results.
Anna
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