Sputum Test submissions and outcome results

To go back to the original post, I too have had a change in sputum results. I had been watchful waiting for a few years, then was told it was time to treat. I have BE and mycobacteria abcessus. I took 3 strong antibiotics (not the big 3 for various reasons) for 5 months. I kept testing positive all that time. I’m 72 yo and by the end of 5 months, I felt like I was dying from the treatment and getting nowhere, so stopped treatment. That was 12/23. My health improved but I continued to have positive sputum results - until my last two monthly tests, which came back negative! Doctor doesn’t know why and wonders if they were good samples, but one was collected in the clinic and the other was at home with ABUNDANT mucus. So idk what that means, . . . But yes, I have now had inconsistent results.

@sueinmn Hi! You mention that you have a open order for sputum test, That is the question I wanted to submit here. How often is for any of you here in the group allowed to do a sputum test? I believe NJH recommends every 3 months. I have to request it from my pulmonologist here only when I see some changes in my sputum’ color, even though I have no other major symptoms like constant coughing, fever or blood in sputum. And even with some of the sputum change of color, I’m having some issues getting the order to be sent at LabCorp, Thank you.

@loveu After 8 years with bronchiectasis, 40+ with asthma, and being treated for MAC & pseudomonas, my 2 pulmonologists and I have a rapport.
My "standing order" is for cultures at least twice a year, or whenever I have an exacerbation.
Typically, that means about every 3-4 months I produce enough mucus to give 3 specimens in a 48 hour period for culturing. My last one was in October. Next week I will do daily saline nebs in an effort to get enough sputum to culture.

My doctor has asked for sputum samples twice a month. I have trouble producing those consistently. I have bronchiectasis and NTM. I've been treated for over a year with amikacin (inhaled), and the Big 3, and then clofazimine was added. I've been on and off these drugs for years. I was diagnosed in 2015 with both these conditions. They can't knock out the infection. For a short period of time, the sputum test was negative. The CT scans show worsening condition, such as cavitary NTM. I tolerate all the meds well, but none of them have helped thus far, unless they are slowing the condition--which is impossible to determine. I have begun to believe I am not doing enough for airway clearance. I thought, incorrectly, that low sputum and little to no coughing meant I was getting better. In fact, the illness was festering deep in my lungs, apparently. My ID doctor did not emphasize clearance. She also was dismissive of the sputum's color, which makes no sense to me. It's curious to me that all these drugs haven't done more: 5 antibiotics a day, and none are knocking out the NTM. Does anyone have some answers for me? I am coughing more than a year ago, and I am quite winded with any hills when I walk.

Kind regards to all,
Mokie

Mokie

I have a standing order for monthly sputum tests.
Have had positive, negative positive negative results. Started antibiotics 4/23. Latest CT scan shows disease progression.

@sueinmn I guess it depends what protocol the doctor follows. My recent CT scan in July 15th, shows lungs stable since the end of last year. I’ve just noticed a little change of color in my sputum that had areas with yellowish color. The doctor’s nurse assistant messaged me asking me if I had several symptoms. I never had this issue before trying to get an order to check my sputum. The last one was done in April and was negative. I told her my only symptoms were the color of the sputum and having some mild night sweats. I’ll keep you posted on what they decide if to send the order or not. I really don’t want to change pulmonologist again, my ID doctor is also at Mayo, AZ.