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How do you distinguish between a Bronchiectasis vs NTM flare ?
MAC & Bronchiectasis | Last Active: Jun 25 7:53pm | Replies (15)Comment receiving replies
@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 .
Replies to "@sueinmn In the past 6mths I’ve started realizing that my local pulmonologist has left many holes..."
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@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