How do you distinguish between a Bronchiectasis vs NTM flare ?

@cholash I don’t really have any guidance for you other than to say your question is a good one. Both my NTM experts, NJH and UCSF, state in their notes that I am not an exacerbator (not yet anyway) but I had/have (still treating) an advanced NTM infection. So my NTM infection itself was not considered an exacerbation. Why? In my case it might be explained by the fact that at least one of my experts thinks my NTM came first, Bronchiectasis (BE) second. ”Exacerbation” suggests a worsening of something already existing. But certainly we hear all the time that BE makes one more susceptible to NTM and I know many non-expert doctors treating in this area assume the BE preceded the NTM. So, for those with existing BE, why wouldn’t an NTM infection itself be considered an exacerbation? Certainty NTM can do considerable damage, like “exacerbations”, as is true in my case. I agree with Linda that clinicians at times comment that those with BE and NTM often don’t exacerbate as frequently as BE patients without NTM. I believe this comes from a 5 year study published about a year ago that essentially says as much. Most of the BE/NTM heavy hitters in US were involved in that study. But again, why is someone with BE that develops an NTM infection not considered to be having an “exacerbation”. Certainly those with an NTM infection can and do have increased cough, sputum production, sputum changes, etc., all the “signs” of an exacerbation … so what is the distinction? Is it intensity? Does NTM “flare”? That’s an interesting question. Certainly for many it seems more of a slow march but not always. Some are very symptomatic at the time of diagnosis. Maybe they were for a long time, but often symptoms worsen which forces further inquisition with new doctors, etc. Why is this not considered a “flare”. I have seen comments like “acute on chronic infection” on my CT. That sounds like a “flare” to me. So all to say, like you, I don’t understand the distinction. We patients could use a presentation focused solely on exacerbations with a looooooong Q&A session. Lastly, I agree with others the most important thing is to get to the bottom of what is presently going on. Hopefully by now you have taken a respiratory culture (and fungal) to see if anything other than NTM is brewing. It’s possible that your NTM is worsening but seems equally plausible that you just have a cold or something viral that is kicking things up. We all need to keep our medical teams on a short leash (I know, easier said than done) so we respond to these changes quickly and thoroughly. Good luck!

@bayarea58 thank you so much for all of your insight & personal experience . I feel like the more I learn , the more unanswered questions that remain . The study you referenced is interesting. I know for certain that BE came first for me, however I’m not sure I’ve been spared from less exacerbations from having both BE & MAC .
This disease is a doozy.
Yes, I’m waiting for culture results at this time , praying for no surprises . Thank you again , and wish you the best with your NTM treatment !

@cholash I asked AI your question and AI defines an exacerbation as a “sudden worsening of symptoms” that can be attributed to many causes including NTM: “A practical way doctors frame it is: Is this exacerbation mainly mucus/bronchiectasis mechanics, a superimposed bacterial/viral infection, or evidence that NTM disease is becoming more active? They determine that with repeat cultures (including AFB), additional infection testing, and imaging comparisons.”

@cholash @bayarea58
A quick thought as I read the last few posts. Food for thought, possibly. Well maybe not a quick reply....🤔

My understanding is that with almost any infection you are more than likely going to have a fever and that a fever helps the immune system and white blood cells to function better and help us.
I know, long before I was diagnosed with BE/MAI I would bundle up to raise my temperature if I wasn't feeling well and it helped many a time because by the morning I felt better....on my way to recovery.

As we know the BE is damaged lungs that allows mucus to accumulate and not move out of the lungs unless we work to clear it out. When I did not know I had BE but knew something was wrong I had one night of a slight fever and did what I mentioned. By the morning I felt better. This happened during the time I was bringing up, every once in a while, a green gel like glob. I told my PCP and he said it was nothing to worry about. Now I know the green glob was a mucus plug. Again I had not been diagnosed with BE/MAI at that time....yet I was saying to my PCP "Something is wrong."

My non-professional thoughts, and without a study to back it up....I believe in my case I had the BE first and was accumulating mucus the green glob, that was sitting there and caused the infection to surface. What I attribute the infection to is that I had cleaned two bird houses and opened bags of peat moss. At that time I said to myself 'You just breathed in a mess of stuff." I knew that wasn't good but I did not know what it might cause. Sometime later I used a leaf blower to blow dried leaves away from the side of my house. I did the first two a year or two before the BE diagnosis...it was after the leaf clean up that I began having to clear phlegm almost all day long.

Since doing the therapy that we have to do for ourselves I no longer have the green mucus but do have the light yellow mucus and continue to have, so far, a low load of MAI. I feel well however I have much mucus to clear all day long and especially after eating.
For me, I have mucus plugs forming all the time (In my mind I feel my lungs are really damaged with pockets that hold the mucus in until I am able to clear it) and believe that if I couldn't get the mucus plugs up and out and didn't know about what we have to do to clear.......the plugs..... I would eventually have an exacerbation. My thoughts about the cause of an exacerbation, however don't know for sure, relate to mucus plugging with an infection. I say this because of the times I am huff coughing and having to work much harder in order to clear ......I bring up mucus plugs......When I clear and it is loose, not mucus plugs, it is easy to clear and I am not having to work as hard to clear the mucus .

For me with all I have read, I agree with what was said above by Sue and cholash about what a exacerbation is. This I have not had, as yet with the BE and MAI. I personally think in my case I had the BE first due to the pneumonia infections both at the same time (Legionella/Mycoplasma) long before the BE diagnosed. I believed and told myself, long before I was having any lung problems, that my lungs were 'scarred and damaged" due to the bout with both the pneumonias at the same time. Don't know for sure but it makes sense.
Then to add to that .........the possible nightly acid reflux, that was happening a few years before the BE diagnosis, due to sleeping on my back and sleeping with my mouth open. I had no idea what was happening as I slept until a year or so before my diagnosis when I accidently found out I was sleeping with my mouth open. It also caused dry mouth by morning, which when I look back the sleeping with my mouth open probably dried me out more so, especially since I was not drinking enough water and have had a history of dehydration since the pneumonias.

So in my case and in my non-professional opinion and thoughts....all added up to the BE and MAI and the timing of it all.
As I have said before, it is my belief that it is never just one thing that causes an event or problem.
Barbara