Sputum Test submissions and outcome results

Posted by blm1007blm1007 @blm1007blm1007, Feb 4 2:40pm

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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Curious to know what low load means with regard to sputum test results. I have never been told about these readings. I am on watchful waiting and would like to remain that way! My weight it stable, still cough daily but keep things at bay with airway clearance. Thanks

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Profile picture for mariegrace @mariegrace

@blm1007blm1007
Thank you Barbara. Having a tough time, lost my husband on october 16th who did my chesr PT every morning. Now I use the vest. Doing whatever I can to keep my lungs clear as possible.

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@mariegrace my deepest sympathy on the loss of your husband.

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Profile picture for mariegrace @mariegrace

@blm1007blm1007
Thank you Barbara. Having a tough time, lost my husband on october 16th who did my chesr PT every morning. Now I use the vest. Doing whatever I can to keep my lungs clear as possible.

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@mariegrace I’m very sorry for your loss. Hugs to you.

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Profile picture for blm1007blm1007 @blm1007blm1007

@kathyjjb Can you do your own percussion cupping on either side of your breast bone and would you be able to bend your arms at your elbows to reach your back and with your fists 'pound' on your lungs on the side of your spine....after doing the nebulizing,? What I mean is in between a good few breaths of breathing in the saline and then doing the percussion, air way clearance method and the huff cough before starting all over again. It helps me, at least I feel it does.
I feel I was somewhat compacted to start with and in time with nebulizing and the full process it began loosening up and breaking up the mucus and mucus plugs that were all somewhat compacted . My logic, don't know if I am right.
I did not like the vest...I did not like that it was pounding in areas of the body, stomach,, breast bone, spine, etc.. .....where it didn't need to be pounding. My thought on the vest....needs to be tailor made for each person.
Hope in time you are able to bring up the amount that needs to be brought up and that would put a happy face on you! Putting the time into most everything, generally speaking, makes a difference.
Barbara

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@blm1007blm1007 do you use aerobika for ac or just nebulize sodium chloride and during or after do the cupping and pounding? Do you do it in a sitting position? Thank you

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Profile picture for namd @namd

Curious to know what low load means with regard to sputum test results. I have never been told about these readings. I am on watchful waiting and would like to remain that way! My weight it stable, still cough daily but keep things at bay with airway clearance. Thanks

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@namd I believe that it is related to how much they find measured in colonies and can be reported as colonies or a + number such as +1. The high end of colonies apparently could possibly be subjective, meaning some pulmonologists might have different views.
I was told that when the number gets up to thousands is when we need to get concerned.
Another was told in the low 100's. Go figure. My results early on were saying...+1 and 7 colonies. Now, apparently, none is showing. Hope that is actual and stays that way.
I see the test results on the information that comes onto MyChart when I log into my medical information on the MyChart of the medical facility....such as the medical system my pulmonologist is associated with.
You might ask to see the lab report...Also not all labs can detail the type of infection and may not be able to fully detail all that the Tyler Lab and NJH lab can do.
Barbara

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Profile picture for lilianna @lilianna

@blm1007blm1007 do you use aerobika for ac or just nebulize sodium chloride and during or after do the cupping and pounding? Do you do it in a sitting position? Thank you

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@lilianna For me, my decision, I do not use the Aerobika. If I am not mistaken Scoop doesn't use the Aerobika either. She may help also in this question and thought.
In doing the breathing methods I try to release my breath with resistance by breathing out and keeping the checks from being puffed out...as if blowing on a whistle.
Sometimes standing sometimes sitting to do the huff cough. Now that you asked that question I want to remember to do it sitting straight up. Why, to keep the bladder tight, at least I think that is what sitting will help with and do.
As we have all been told, we have to find our way to what is comfortable and able to do and think is O.K. for each of us...because we are all different.
I am, so far, very fortunate that what I have tried and doing seems to be working, for now.
Barbara

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Profile picture for blm1007blm1007 @blm1007blm1007

@namd I believe that it is related to how much they find measured in colonies and can be reported as colonies or a + number such as +1. The high end of colonies apparently could possibly be subjective, meaning some pulmonologists might have different views.
I was told that when the number gets up to thousands is when we need to get concerned.
Another was told in the low 100's. Go figure. My results early on were saying...+1 and 7 colonies. Now, apparently, none is showing. Hope that is actual and stays that way.
I see the test results on the information that comes onto MyChart when I log into my medical information on the MyChart of the medical facility....such as the medical system my pulmonologist is associated with.
You might ask to see the lab report...Also not all labs can detail the type of infection and may not be able to fully detail all that the Tyler Lab and NJH lab can do.
Barbara

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@blm1007blm1007
Thank you so much for such a thorough reply. We have an NHS app here in the UK but that information is not included in the results we are sent. I will ask my consultant at my next appointment in April.

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Profile picture for blm1007blm1007 @blm1007blm1007

@lilianna For me, my decision, I do not use the Aerobika. If I am not mistaken Scoop doesn't use the Aerobika either. She may help also in this question and thought.
In doing the breathing methods I try to release my breath with resistance by breathing out and keeping the checks from being puffed out...as if blowing on a whistle.
Sometimes standing sometimes sitting to do the huff cough. Now that you asked that question I want to remember to do it sitting straight up. Why, to keep the bladder tight, at least I think that is what sitting will help with and do.
As we have all been told, we have to find our way to what is comfortable and able to do and think is O.K. for each of us...because we are all different.
I am, so far, very fortunate that what I have tried and doing seems to be working, for now.
Barbara

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Yes, I agree.

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