Sputum Test submissions and outcome results

You have read my mind. I have wondered the same thing. November 2024 to April 2025 was testing positive for MABC. April 2025 count was super low and NJH took me off the antibiotics I had just started 3 weeks prior (ordered by local). Count was about 30 and NJH told me over 400 is high. Then negatives up through August 2025 cultures. November 2025, I got a positive but count was only 22. That is super low. I also wondered if it's original infection just so deep down there (covered by macrophages) or was it because of an environmental exposure? Just sent in January 26 sample and so far nothing growing as of today, which leads me to another question. NTMs and MTB are gram positive rods, which have appeared in the microscopic analyses when I test positive for NTM but do not show up in when I have tested negative. So wondering if I can predict whether or not the culture would be positive or not? Or at least the AFB smear.

My pulmonologist doesnt do MAC cultures only bacteria for " surveilllance" so if I have a flare up, she knows what antibiotic to prescrcri.be. I have MAC so no need to do cultures.

@mariegrace
This is a bit confusing to me.
If you have MAC wouldn't it be tested to make sure the MAC isn't growing and what type of MAC you have??? Isn't MAC a bacteria???

Not sure I am understanding fully your explanation however it appears you might be sending in sputum cultures for testing that would test for MAC. Dr. P. McShane, who is high on the Pulmonologist Chain for knowledge and care of BE patients, had me send sputum cultures in monthly, even with my having a low load of MAC/MAI.
My preference is to send in often to know how I am or am not progressing...lessening or increasing in the amount of bacteria/MAC/MAI showing.
Thank you for reading and responding.
Barbara

@kathyjjb Hi and thanks for your reading my post and answering.
Were you referring to colonies when you indicated "400 is high?"
Wish I could answer your question. Might be one to ask your NJH pulmonologist. If you do, that would be a great share.

I did not continue with NJH after that first week long visit due to the distance. Nice that you continue with the facility and pulmonologist there.
We are very lucky that our load appears to stay low. I would imagine there are various reasons why ours stays low or no show..... but I attribute it to diet, supplements, saline, postural drainage, airway clearance methods, huff coughing and mask wearing in public. Sounds like you do the same. I do remember seeing your kathyjjb elsewhere and reading them...you may have explained all you do for your BE/MAC in other posts.
Barbara

@blm1007blm1007 & @kathyjjb My pulmonologist told me that with MAC/NTM "everywhere" it is not unusual to have very small amounts show up in my culture.
I have had 3 "positive" cultures since 2020 out of more than 12, but none with a significant amount of NTM. In 2 cases, where I submitted 2 cultures together, one was positive and the other negative. My last 2 samples, submitted at the same time, showed "positive" on the slide, but nothing grew on the long culture - we attributed that to probable contamination from saliva or environment.

I have an open order for sputum cultures, and vials at home, so I can submit samples whenever my mucus increases.

@sueinmn Hi Sue, that's encouraging. Prior to getting AFB results, NJH labs post the microscopic analysis which quantifies (rare, few, many) different types of bacteria (normal flora, gram negative or gram-positive cocci, rods etc.). One thing I have noticed is the times my AFB smear and culture come back positive, there are rare or few gram-positive rods. Reversely, when AFB is negative, there is no mention of gram-positive rods. Since, NTM are gram-positive rods-I feel I have some indication whether or not my culture will be negative or positive. What do you think? When I saw there were no gm + rods, I messaged nurse and she said AFB smear results have not been completed/posted.

@blm1007blm1007 Hi Barbara, yes, it sounds like we do the same thing other than postural drainage-which has never helped me. I did ask my NJH ID doctor about recurrence vs reinfection, and she thought in most cases it's reinfection. She did not rule out the possibility of recurrence. I like Sue's response and that's probably the case minus a few exceptions. That said, I'm going to keep up with my nebulizing and exercising. In November, I decreased my nebulizing 1/day, and a few days not at all. Then with the November positive test, I'm back to nebulizing 2/day. Why take the chance?

As for the "over 400 is high", ID doctor was referring to "count/ml" and I'm not sure if that's colonies. I was thinking it was how many of the individual bacteria is in 1 ml.

@blm1007blm1007
I tried to take the 2 drugs for MAC but had to stop it after 7 weeks because of severe abdominal pain.
So we know I have MAC, that is pulmonologist explanation. No point in doing a culture.

@kathyjjb Every lab, test protocol and lab report seem to differ differ. I am not a doctor, so I have no idea and rely on my pulmonologists and their excellent staff. Right now, I am trying to figure out why Quest Diagnostics is taking 5 days to report on a test that takes 24 hours at my home clinic...sigh.

@mariegrace
Did you take a probiotic and or have yogurt while taking the antibiotics? Some people do better by keeping the gut microbiome in good condition so that the antibiotics don't destroy the good bacteria etc. You may already know this???

If I ever 'have to' start antibiotics I will be sure to prepare myself for them a good couple of weeks before starting them by eating and taking everything to help while on the meds.......like a good and reasonable amount of yogurt to get the 'gut' ready for the meds and double up on the pure non altered food products .... that I do stick with now.....lots of vegetables and no sugar. Hoping I go a long time with not needing the antibiotics....there is a little luck factor in that due to 'things happen.'
Barbara