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Follow up/Which specialists do you see for MAC with Bronchiectasis?
I posted this question last week. Thank you very much for your replies! “Which specialists do you see for MAC with Bronchiectasis?”
I wrote “I have been seeing a pulmonologist. Because I am fortunate to live in an area with a nationally recognized medical facility I figured I would get a second opinion for treatment with an Infectious Disease specialist. Ugh! They have opposite opinions. Just wondering what the general consensus of our group’s health care provider/s are. Pulmo or ID?”
After several days of anxiety over the opposing recommendations I am still uncertain what to do. Dilemma: my pulmo is treating me with Rifampin 450 mgs, Ethambutol 1200 mgs and Azithromycin 250 mgs M W & F. Have been taking this since 12/24.
The ID doc says he is not sure I meet criteria for treatment. Says he would have required 3 positive for MAC sputum cultures because not everyone who has MAC develops problems from it. I guess I am fortunate that I don’t produce mucus like so many patients do. My pulmonary doc recommended a bronchoscopy 6/24 which revealed MAC on culture. The ID doc said, “If continuing current antibiotics is desired, I would recommend the following regimen:
Azithromycin 500mg three times weekly, OR 250mg once daily
Ethambutol 1,500mg three times weekly
Rifampin 600mg three times weekly.”
My history is: 63 year old with unresolving pneumonia 18 months ago. CT scans every 3 mons for one year revealed new and increasing number of pulmonary nodules along with new and worsening tree in bud appearance in both lungs. Had major unrelated surgery 10/24 so MAC treatment was not started until 12/24. I know everyone if different. I think I am going to choose continuing the antibiotics and possibly increasing the dose even though I am already having bloating & heartburn on the current dose. I can hardly believe the opinions differ SO much! 😳😕🫨
Thx for reading,
Teresa
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I was told in no uncertain terms that i had to have both the pulmonary and the ID doctor to continue treatment.
Pulmonary for the airway clearance and the ID for the MAC . My problem is that neither doctor seems to know or understand what the other does. ANd of course they wont consult with each other. I take the big three daily not three times a week, wish i had known this was an option, because of the side effects. I have always been asymptomatic, but tree/bud shows on xray, been on treatment for a year. Going to ask to discontinue the meds and do active surveilance yearly with CT scans. I dont think i meet the criteria for doing treatment for another year.
Thank you for your reply. Wow! So frustrating even for someone like myself (a RN) who knows how to navigate the system. The “practice” of medicine. It is certainly not an exact science, often based on the doctor’s experience. I am thinking I meet criteria for treatment based on multiplying nodules on CT scans every 3 months for a year. Sounds like you have definitely given it your best effort! I wish you well! 🙏 ❤️
I see one doctor for both NTM and bronchiectasis. Both the local pulmonologist and Infectious Disease doctors did not feel they could treat me. Therefore I travel close to 400 miles one way to the Pulmonary Clinic in Tyler.
All my monthly sputum samples are sent to the great lab at UT Tyler just as they had been when the Pulmonary Fellows were treating me at BAMC in San Antonio. Any other labs are completed locally.
Thank you for your reply @notnancy88 !
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1 ReactionI have Kaiser and have a pulmonologist for bronchiectasis and an Infectious doc for MAI. I like both. I currently am on waiting and watching for the antibiotics. My ID did want me to try the antibiotics but I wanted to wait as I didn't feel my symptoms were that bad. My 2 latest CT's have showed no new nodules and some resolving. My docs do talk to each other and work in the same clinic. All in all I am pretty satisfied with them.
@shiela9 thank you for your reply. I do wish health care providers consulted with colleagues especially in different specialties. It seems like ideal medicine; in the best interest of the patient. So glad your doctors do! Best wishes to you, Shiela! 🙂
I have been seeing a pulmonologist for repeat CT scans and scopes leading up to a robotic bronchoscopy 2 weeks ago. Within 10 days I was told I have MAC (negative on 2 previous scopes) and referred to an ID doc. I was told it would take weeks for results so was surprised by the phone call. I have had diagnosed bronchiectasis for about 6 years, but nodules have been developing and increasing. Will be interested in what the ID doc has to say.
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1 ReactionWhen I was initially diagnosed 14 years ago, I was treated by a team at a local hospital that included a pulmonologist, an allergist, and an infectious disease specialist. They were all in sync, but I was not getting any better. Moreover, they refused my request to try treating me with Tobramycin, which at that time was just started to be used for bronchiectasis. The reason they gave was “we don’t do that here.“After a few phone calls, I found pulmonologists at two university hospitals in my area, who said they would consider that treatment for me and I made an appointment with the one who would see me soonest (At Temple University Long Center). I’ve been with that doctor ever since. For me, the operative question always is not who is the specialist, but what treatment is working. Recently, my infection morphed into one that was resistant to , and I got so bad I had to be hospitalized for a week. In all, it took nine months to come up with a therapy that worked, which now includes azithromycin. Through it all, my Dr. and his great team were very responsive to my questions and needs. For me, results, and not the specialists field, matters
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3 ReactionsSounds like you are in good hands! Best wishes and improved health to you @spectrumcyclist