1. < MAC & Bronchiectasis

Penn Medicine/Rifampin

Posted by njlynn @njlynn, May 5 3:23pm

Hello, I am new to this platform while I've had bronchiectasis for 7 years, I only recently tested positive for MAC . It was a bombshell for me; I suppose since I'd gone 7 years without testing positive for it, I had put in out of my mind.
I've been going to Dr. Michael Rey at Penn Medicine Harron Lung Center for treatment since 2022 and just wondered if there are other people getting treated at Penn on this Forum.
I recently started the Big 3 antibiotic regime- about to add rifampin this week -- but saw an interesting post on this site casting doubt on rifampin's efficacy. So I am curious whether most other people taking antibiotics for MAC are skipping it or taking it?
NJLynn

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blm1007blm1007 | @blm1007blm1007 | May 20 7:48pm
In reply to @amap2025 "K, Thank you for your quick response. I am feeling silly after your answer. I have..." + (show)
@amap2025

K,
Thank you for your quick response. I am feeling silly after your answer. I have BE with MAC. Just getting started in all this education and self care.
So grateful for all the wonderful people who are willing to take time to help each other.
Take care
Ann

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Just want to be sure your question about "What do you mean about diligent AC" was answered such that you understand.
The AC references Air Way Clearance.
Do you do it? Have you been taught to do it? If not there are different methods of AC, of which you can find on the internet. I don't have the addresses available but I believe you can find them. Let us know if you need more info from others about AC.
Barbara

REPLY
1 reply
amap2025 | @amap2025 | May 21 7:02am
In reply to @blm1007blm1007 "Just want to be sure your question about "What do you mean about diligent AC" was..." + (show)
@blm1007blm1007

Just want to be sure your question about "What do you mean about diligent AC" was answered such that you understand.
The AC references Air Way Clearance.
Do you do it? Have you been taught to do it? If not there are different methods of AC, of which you can find on the internet. I don't have the addresses available but I believe you can find them. Let us know if you need more info from others about AC.
Barbara

Jump to this post

Good morning Barbara,
I did get a reaponse to my AC question. Thank you for following up. I dont know if i am over reacting but there seems to be alot of info and places to get it. I have appts at Mayo next week.
This is a place that gives alot of info and support.
I am grateful
Ann P

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1 reply
blm1007blm1007 | @blm1007blm1007 | May 21 10:38am
In reply to @amap2025 "Good morning Barbara, I did get a reaponse to my AC question. Thank you for following..." + (show)
@amap2025

Good morning Barbara,
I did get a reaponse to my AC question. Thank you for following up. I dont know if i am over reacting but there seems to be alot of info and places to get it. I have appts at Mayo next week.
This is a place that gives alot of info and support.
I am grateful
Ann P

Jump to this post

I would think they have a 'good' respiratory therapist at Mayo to take the time needed to show you and work with you with all the ways to help one clear out the mucus. Active Cycle Breathing, Autogenic Breathing/Drainage, Postural Drainage, etc.
Hope to hear you say, yes they gave me a session or two on each type of technique to clear the mucus from the lungs.
Barbara

REPLY
1 reply
amap2025 | @amap2025 | May 21 7:46pm
In reply to @blm1007blm1007 "I would think they have a 'good' respiratory therapist at Mayo to take the time needed..." + (show)
@blm1007blm1007

I would think they have a 'good' respiratory therapist at Mayo to take the time needed to show you and work with you with all the ways to help one clear out the mucus. Active Cycle Breathing, Autogenic Breathing/Drainage, Postural Drainage, etc.
Hope to hear you say, yes they gave me a session or two on each type of technique to clear the mucus from the lungs.
Barbara

Jump to this post

I will update after next week.

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