What does this fluctuation in AFB sputum tests in a short time mean?

Posted by paxmundi @paxmundi, 3 days ago

Got my latest sputum test. I am curious as to the fluctuation of my acid fast bacilli if anyone can weigh in. This last report was discouraging. Though Nocardia didn't appear for a second time. (Three samples but only the first showed Nocardia)> I am wondering if that is because the most recent test is less sensitive.

AFB CULT
Value
Normal Range
Mar 17, 2025
Final Report Mycobacterium avium isolated . Stains/Preparations Many Acid Fast Bacilli seen on smear.

Feb 6, 2025
Final Report Mycobacterium avium isolated . Stains/Preparations No Acid Fast Bacilli seen on smear.

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@paxmundi Hmm, is this the report on the slide, before the sample is sent for a complete culture? If so, the culture should grow NTM if there is any.
But, since this bacteria is literally everywhere, it is entirely possible for it to show on the smear, but if there are only a few bacteria, they won't grow out in the culture, or the number will be so small as to be insignificant.
Do youmhave any other evidence of an active MAC infection?

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@sueinmn

@paxmundi Hmm, is this the report on the slide, before the sample is sent for a complete culture? If so, the culture should grow NTM if there is any.
But, since this bacteria is literally everywhere, it is entirely possible for it to show on the smear, but if there are only a few bacteria, they won't grow out in the culture, or the number will be so small as to be insignificant.
Do youmhave any other evidence of an active MAC infection?

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I don’t know much about reading these reports but I think this a complete culture report. I submitted the sample on March 17th and got the results today for this most recent submitted sputum sample. The test that says Feb 2 didn’t yield a report until March 16th or 17th. I immediately submitted the third sample because one had shown Nocardia and the subsequent one had not.

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I have my sputum tested on a monthly basis. AFB is negative and I sporadically test positive for MAC Avium. I’m trying to stay away from from antibiotics.

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@paxmundi

I don’t know much about reading these reports but I think this a complete culture report. I submitted the sample on March 17th and got the results today for this most recent submitted sputum sample. The test that says Feb 2 didn’t yield a report until March 16th or 17th. I immediately submitted the third sample because one had shown Nocardia and the subsequent one had not.

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My doctor told me the acid fast smear is where the lab looks for TB (which has to be reported to the County health department) and the results only take a day or so. The culture, which takes six weeks to grow, is where the MAC and all the other fun stuff show up. Does that fit with your experience?

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@tcd518

My doctor told me the acid fast smear is where the lab looks for TB (which has to be reported to the County health department) and the results only take a day or so. The culture, which takes six weeks to grow, is where the MAC and all the other fun stuff show up. Does that fit with your experience?

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I am in the process of transferring doctors. That is why I am in the dark. I had a separate test for TB, which was negative.

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@paxmundi

I am in the process of transferring doctors. That is why I am in the dark. I had a separate test for TB, which was negative.

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It's hard to tell from these reports, which don't contain any quantifiers. I would feel in the dark as well. How soon do you see the new doctor?

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@tcd518

My doctor told me the acid fast smear is where the lab looks for TB (which has to be reported to the County health department) and the results only take a day or so. The culture, which takes six weeks to grow, is where the MAC and all the other fun stuff show up. Does that fit with your experience?

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No, when I was first diagnosed I was positive for both the AFB and the culture. Once I started the airway clearance with 7% saline, my bioburden decreased. Now I only test positive sporadicly for MAC Avium.

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@sueinmn

It's hard to tell from these reports, which don't contain any quantifiers. I would feel in the dark as well. How soon do you see the new doctor?

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Hi Sue,

I thought I had responded to this but apparently not. Thank you for taking the time to give me feedback.

I don’t even know what quantifiers are, so obviously I have a ton to learn about what tests to ask for, and how to read them. I’m a Kaiser member and I wanted to wait and transfer my care after filing a grievance but realized that was too risky: if I have any emergency, I will have to come into contact with the pulmonologist that failed to tell me I had bronchiectasis though it was plain as day on my CT scan back in 2019. So last night I just chose another person who may or may not know very much about BE but who went to UCSF and is supposed to be a nice person. It’s all on flux.

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@sueinmn

It's hard to tell from these reports, which don't contain any quantifiers. I would feel in the dark as well. How soon do you see the new doctor?

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Sue- Should we expect with each report the name of the specific bacteria and a 1+ - 4+ etc. indication of how bad it is?
I am also concerned with my recent results from the Tyler Lab. It appears to me they are not being consistent in the way they report each time causing confusion, concern and as you said it makes one feel one is "in the dark"....It is now over 8 weeks (March 2, 2025 submission) and no final AFB Culture Report that has in the past indicated the type of bacteria. At this point I have to assume it is still being cultured. The December report did indicate MAI and stated Abnormal...Prior to the December report it gave a numeral associated with the bacteria. For me I would like to know specifically ....how abnormal....
I have messaged Tyler and am asking for an explanation and details.
I also am in the middle of determining who to see as a new pulmonologist and as well the lab due to McShane leaving and taking with her...... her expectations and standards she required at Tyler in all aspects.
Always going to be changes in life but not always an easy thing to deal with.
Barbara

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@blm1007blm1007

Sue- Should we expect with each report the name of the specific bacteria and a 1+ - 4+ etc. indication of how bad it is?
I am also concerned with my recent results from the Tyler Lab. It appears to me they are not being consistent in the way they report each time causing confusion, concern and as you said it makes one feel one is "in the dark"....It is now over 8 weeks (March 2, 2025 submission) and no final AFB Culture Report that has in the past indicated the type of bacteria. At this point I have to assume it is still being cultured. The December report did indicate MAI and stated Abnormal...Prior to the December report it gave a numeral associated with the bacteria. For me I would like to know specifically ....how abnormal....
I have messaged Tyler and am asking for an explanation and details.
I also am in the middle of determining who to see as a new pulmonologist and as well the lab due to McShane leaving and taking with her...... her expectations and standards she required at Tyler in all aspects.
Always going to be changes in life but not always an easy thing to deal with.
Barbara

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Every lab reports differently, so it is hard to say. Also, the amount of detail can depend on the codes the Practitioner used in ordering the labs and the sophistication of the testing at each individual lab.

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