Treatment of Mycobacterium Abscessus

@susiellen Well, hello and welcome to the world of posters on Mayo Connect after more than 5 years here, I'm glad to hear from you. That diagnosis would bring me on-line as well.
Here is the difference between MAC (Mycobacterium avium complex) and Abcessus (Myobcateria abcessus) - MAC is slow-growing, and delaying treatment for a few months is generally not a problem unless you are very ill or have cavities in your lungs. So doctors wait for weeks while the culture is grown out in the lab and tested to see what antibiotics it responds to before starting treatment. Abcessus, on the other hand, can progress quite rapidly, especially if you are older or have other underlying conditions or a weakened immune system. Doctors are inclined to begin antibiotics immediately, and adjust as the results come back.

All that said, I have a few questions for you - is your pulmonologist experienced in treating MAC? This is not a reflection on their abilities - just that MAC quite rare - under 100,000 cases nationwide per year, and far fewer cases of Abcessus. So many pulmonologists never, or hardly ever see it, and may not be following the latest protocols.
How often have you had sputum cultures, and why was this one ordered? Routine followup, or a change in your health? Do you know where it was sent for culturing?
Finally, how are you actually feeling? Cough, fatigue, weight loss, fever?

I look forward to talking to you.
Sue

Sue, thank you so much for your response!
I go to Mayo Jacksonville every 6 months for testing/follow-up and see a pulmonologist who specializes in NTM. I have cultured Abcessus every visit over the past 5 years but no treatment as PFTs, CTs, etc., have remained stable. I feel fine, have no exacerbations, and do airway clearance and Aerobika 2x per day.
This past visit in early April, for the first time, my Acid Fast Smear was positive and the pulmonologist said that meant growth of bacteria and it was time to treat. Still waiting for the culture.
I was wondering if anyone had experienced a positive Acid Fast Smear and was told it was an indicator that treatment should begin.
I basically understand what goes into making the decision as to whether or not to treat, but have never seen “a positive Acid Fast Smear” as a reason for starting treatment, so that’s why I’m curious about that specific point. (I know it’s an indicator of TB, which I don’t have!).

The AFB smear is the first look a lab takes at a sputum sample being tested for TB or NTM. TB and NTM are acid fast bacteria (AFB). A thin layer of the sputum sample is smeared on a slide and then colored with a dye that is taken up by the bacteria. Then the slide is treated with an acid which bleaches out most of the bacteria. The ones that hold the color are “acid-fast” and are the TB and NTM. When the smear is reported as positive, usually with the number of organisms seen on a high power field, it means the bacterial load is relatively high. When the smear is negative, it typically means the bacterial load is lower, although there may still be enough for a positive culture. The lab can’t tell from a positive smear which specific organism you have. That can only be determined when a large enough quantity of the bacteria have grown in the culture.

@susiellen Martha that is very good info. One thing I might add is to make sure there is an antibiotic Susceptibility testing being done on the sample if positive on the culture, which in
Susiellen's case is very likely. Not all labs are set up to do this, and some doctors will just not order it even if available. I would call and make sure that test is being done. Bill

Thank you, Martha. That helps a lot and is what I was looking for (higher load).
From the very short email from my pulmonologist, the positive AF smear means she would like to start treatment. I have to wait for the culture, then she will set me up for a consultation with an ID doc.

Thank you, Bill. I appreciate the info. The need surprised me because the day of the office visit, after review of CT, PFTs, she said everything was stable. The next day I got the portal notification of the AFB smear, emailed, and she responded it meant it was time for treatment. Waiting for culture results and then appointment with ID doc.
Trying to get ready for what’s to come.

At my Lab, they do both the smear and culture from one sample. If the test culture is positive they always run the test with a new sample a second time as a retest to confirm the first test and at that time if positive again, they use that culture to do a resistance test against different antibiotics so the doctor will know which antibiotics they can use that the bacteria does not have a resistance to. This seems more logical to me.

Sorry if my first comment does not fit the question. When I brought the post up, there was no comments at all. Looks like you may have good advice already.

Thanks very much for your reply. It makes sense and I appreciate it.

Was diagnosed with mycobacterium absessus 2 years ago, I took Amikacin (infusions) for 2 months until tinnitus developed; then went to inhaled Amikacin as well as azithromycin and chlofazimine for a year, sputum cultures came back negative for an entire year. I came off the regimen only to have it back again in sputum after a few months; obviously, am quite discouraged. Anybody have experience with this type of Mac, what medications have you taken; what has been your success? I sure don’t want to start this regimen up again, but not sure I have a choice. Thanks for any of your input.