How do you distinguish between a Bronchiectasis vs NTM flare ?

What are your symptoms of a flare?

@amap2025 fever, increased mucus , change in color & texture ( this time brownish, hints of red color ), extreme fatigue ). More coughing .

@cholash For me "flare" or exacerbation is exactly what you describe, except that I currently do not have NTM. It means my body is being attacked by a virus or infection, and it immediately lands in my lungs. According to my excellent pulmonologists, I now understand it is not important to know what is flaring - just to know when to jump to my pre-determined treatment regimen.

What has you pulmonologist advised you to do in the case of a flare? At what point are you instructed to contact them?

@sueinmn In the past 6mths I’ve started realizing that my local pulmonologist has left many holes in my treatment . To answer your question , whenever I felt something coming on and sick feeling ( it was never called an exacerbation ), I would tell her my symptoms & she would put me on azithromycin, sometimes a Medrol Dose Pack. Last December I went out to UT Tyler for a consult , and that’s where I was better educated on airway clearance , exacerbations , and started for the first time in 6 years sending in sputum samples.
Due to Tyler being a 2 1/2 hr drive, I’m in the referral process of becoming a patient with a pulmonologist at Baylor , Dallas , who will hopefully be a Recognized Center of Excellence before long . They are in the paperwork process So all that being said , I’m aware there hasn't been the best care with any of my exacerbations , unfortunately . Currently , my pulmonologist is out of the country , so I had to get treatment from primary care …very unsettling .
What I was really trying to ask, though , is if a NTM flare feels any different than a regular bacterial or viral flare ? Since I’m newly diagnosed with MAC, and in the thick of an exacerbation , I can’t help but wonder if the MAC could be worsening . Do MAC flares present any different? Side note, I’m waiting on recent MAC culture .

I agree with Sue, it doesn’t matter what caused it as long as you and your doctor have a clear plan of how to identify it and when to contact him or her. I’ve also heard doctors say during conferences, that NTM rarely flares, and that bronchiectasis is generally the culprit.

Happy Sunday,
Linda Esposito

@becleartoday Linda , thank you so much for your response!

@cholash I have gone to Tyler several times since 2024 and Dallas Baylor downtown at least twice. I had/have been trying to find the right fit for me in terms of care and location since 2023...who to see and where. That said...in order to figure it all out and what is best I have seen eight pulmonologist since 2023. Sound nuts, eight, but it is so important to find the right doctor and hopefully one close to home.

The one thing about Tyler is that the lab can detail the specific type of MAC infection one has. I do not know if Dallas sends the sputum for testing to National Jewish or Tyler and/or if they are able to detail all that NJ or Tyler does in their labs..... about the specific type of infection. You can continue sending sputum for testing to Tyler if you see the pulmonologist at least once a year.
The OU Medical Center Pulmonologist(s) I have seen send my sputum to NJ for final testing.
I presently am seeing, here in OKC, a new pulmonologist due to another pulmonologist in OKC referring me to this new pulmonologist at OU Medical Center OKC. The new pulmonologist is head of the Pulmonology Department and has so far referred me to a Speech Therapist and an Infectious Disease Doctor. Previously with all the pulmonologists I have seen this is the first Pulmonologist that has referred me to a Speech Therapist or an ID doctor. That I am grateful for.
The Speech Therapist is helping me with various types of exercises that help with the lungs/breathing and also tongue muscle strengthening.
I have seen Dr. Jung at Baylor, Dallas and thought he is dedicated to his BE patients. Who do you have an appointment with in Baylor, Dallas?
Barbara

@blm1007blm1007 Barbara, you have been busy ! I wish it didn’t have to be so difficult . I envy people who live by recognized BE centers & doctors . I hope the new one you are seeing will be a home run!
I have an appt with Dr Jung next month . Another person that lives in my area, and saw Dr McShane , said he was recommended by her when McShane left . This person also told me Dr Jung can send your specimens to NJH, and he’s currently involved with a BE clinical trial . She’s very happy with him.
Baylor has not been accredited yet by the NTM & BE Assoc, so I do plan to ask him about that specifically , with my list of other questions .
I love my current pulmonologist , as a person . But her knowledge of BE appears to be lacking . I was hoping my local doctor & UT Tyler could work together , but I don’t really see that happening too well.
Any other thoughts on your appts with Jung?
Oh to live in Denver !

@cholash Yes I did see Dr. McShane a couple of times before she left Tyler.
It will take time for Dr. Jung and all to get the Dallas Baylor location to be certified as a Center of Excellence.
More than anything it is the doctor that makes the difference...in terms of their knowledge and interest in treating BE.
Too many doctors in specialties are generalists in their specialty and do not have the time to keep up with all the new information to care for all the types of illnesses their patients have. That is why the need for a pulmonologist that concentrates on BE patients, more so.
Glad you will see Dr. Jung and that they are sending specimens to NJH.
Barbara

@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!