1. < MAC & Bronchiectasis

Eligibility for antibiotic therapy

Posted by helenmp @helenmp, Apr 19 4:55pm

I was diagnosed with MAC about 1 1/2 years ago, verified via bronchoscopy, nodule lung biopsy.
I have been told that since I don’t have a frequent cough, pretty much asymptomatic, that I should postpone antibiotics.
Anyone being treated with these meds and have no symptoms.
I just feel I should be doing something to eradicate this kind of dormant infection that I found I had just by accident.
Any help/advise would be welcomed.
Thanks

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 19 6:02pm

@helenmp There is a fairly specific protocol for when to treat the infection. Let me say, after doing it, it is no "walk in the park" and also not something I would do if not quite ill.

If you want to wade through a very detailed document, you can read it here:
https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf

If you would rather watch a video from NJH, take a look at this:
https://www.youtube.com/watch?v=Dw8hVJp1sJU

After you watch, come on back with any questions.
Sue

REPLY
1 reply
dolllover | @dolllover | Apr 22 10:52am

My doctors are on a "no antibiotic" roll. My PCP and pulmonologist both are against antibiotics. Just two years ago, another infection specialist told me I may need to go on three antibiotics for a year or two.
Since antibiotics cause other problems for me, I am going with PCP and pulmonologist. I have found that the heavy honey brings up all my mucus and has kept my lungs clean. I spit up all day long but do not feel sick.
Crossing my legs and arms that everything holds as I don't miss the montly bronchoscopies.
Great wishes to everyone.

REPLY
1 reply
helenmp | @helenmp | Apr 22 2:39pm

Thanks for your comment and suggestions.
I’m not familiar with heavy honey. Are you referring to just plain honey or is there a special brand of honey that is heavy?
Thanks
Helen

REPLY
helenmp | @helenmp | Apr 22 2:42pm
In reply to @sueinmn "@helenmp There is a fairly specific protocol for when to treat the infection. Let me say,..." + (show)
@sueinmn

@helenmp There is a fairly specific protocol for when to treat the infection. Let me say, after doing it, it is no "walk in the park" and also not something I would do if not quite ill.

If you want to wade through a very detailed document, you can read it here:
https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf

If you would rather watch a video from NJH, take a look at this:
https://www.youtube.com/watch?v=Dw8hVJp1sJU

After you watch, come on back with any questions.
Sue

Jump to this post

Thank you Sue for your response, will check it out
and get back with you.
Helen

REPLY
swang18 | @swang18 | Apr 23 2:01pm
In reply to @dolllover "My doctors are on a "no antibiotic" roll. My PCP and pulmonologist both are against antibiotics...." + (show)
@dolllover

My doctors are on a "no antibiotic" roll. My PCP and pulmonologist both are against antibiotics. Just two years ago, another infection specialist told me I may need to go on three antibiotics for a year or two.
Since antibiotics cause other problems for me, I am going with PCP and pulmonologist. I have found that the heavy honey brings up all my mucus and has kept my lungs clean. I spit up all day long but do not feel sick.
Crossing my legs and arms that everything holds as I don't miss the montly bronchoscopies.
Great wishes to everyone.

Jump to this post

Do you need Bronchoscopy every month? Why?

REPLY
jsblair | @jsblair | Apr 23 9:40pm

Ditto on question about heavy honey @dolllover Are you just eating lots of honey?

REPLY
circleup | @circleup | May 21 8:41am

Same here. . . .completely asymptomatic. Did all the imaging, bronchoscopy, biopsy, cultures and smears. The doctors were looking for something different. But i am positive for MAC. Its hard for me to believe since i have no symptoms, no lung cavities just many lung nodules. My only issue is fatigue, which they say MAC can cause.
I am newly diagnosed and the ID just sent the big three prescriptions to the pharmacy. After reading this forums post now i am afraid to take the antibiotics. Have appts with the PCP and pulmonologist, to discuss my option of doing active surveillance instead. I dont want to take medicines just to become sick from side effects. I dont know what to do since i am at this crossroad. But none of the doctors can tell me the consequences of doing nothing. Cathy

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 21 9:48am
In reply to @circleup "Same here. . . .completely asymptomatic. Did all the imaging, bronchoscopy, biopsy, cultures and smears. The..." + (show)
@circleup

Same here. . . .completely asymptomatic. Did all the imaging, bronchoscopy, biopsy, cultures and smears. The doctors were looking for something different. But i am positive for MAC. Its hard for me to believe since i have no symptoms, no lung cavities just many lung nodules. My only issue is fatigue, which they say MAC can cause.
I am newly diagnosed and the ID just sent the big three prescriptions to the pharmacy. After reading this forums post now i am afraid to take the antibiotics. Have appts with the PCP and pulmonologist, to discuss my option of doing active surveillance instead. I dont want to take medicines just to become sick from side effects. I dont know what to do since i am at this crossroad. But none of the doctors can tell me the consequences of doing nothing. Cathy

Jump to this post

Cathy - Welcome to our group. There is a big difference between "active surveillance" and "doing nothing" - let me direct you to a list of the basic reading that might help you understand the choices so you can talk with your pulmonologist before starting the meds.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

Reading some of these will lead to lots of questions - we're here to help - some of us are new to MAC like you, others have been dealing with MAC for 5, 10 or even 20 years.

Sue

REPLY
Please sign in or register to post a reply.