No symptoms or health problems

Posted by mholm @mholm, Jan 12 10:13pm

I was diagnosed with MAC and B. after pneumonia but have no symptoms or health issues. I am 71, active and have no breathing problems so I'm reluctant to start a year of antibiotics when MAC often comes back. Would appreciate hearing from anyone similar. Have been told asymptomatic people tend to be tall, thin, female over 60. Gardeners working with dirt where MAC microbes reside.

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

If you are generally healthy, you probably can do awc to keep it under control. If it can't be under control, you will be fine. If you can't control it, then you start antibiotics.

REPLY

Beware the next round of pneumonia. My second case is when all the troubles began.

REPLY

If you haven’t had a pneumonia vaccine, you might want to get it.
Good luck. Hope you can monitor the MAC and wait and see, if that is the approach to using antibiotics that you want to pursue.

REPLY

@mholm Welcome to Mayo Connect - in our support group you will find people with a full range of experiences ranging from never using antibiotics to being on them for years.

If you have no symptoms at this point, you may be in a good place to try to avoid antibiotics. There is a treatment protocol called "watch and wait" - where you do daily airway clearance, preferably with 7% saline nebs, and your pulmonologist monitors the level of your infection with frequent sputum cultures and periodic CT scans.
Here is an excellent video (long but worth watching) on airway clearance by Dr Pamela McShane, a Bronchiectasis expert at the University of Texas - Tyler:


If this keeps the infection contained, and there is no more damage to your lungs, you can continue in this mode indefinitely. If your infection or lung damage progress, or you become symptomatic, then you explore starting antibiotics.
Here is a current video from National Jewish Health with guidelines on when to treat and when to watch:

If you are following this strategy, it is important to do it under the watchful eye of a specialist experienced in managing Mycobacteria infections. They keep informed of all the besdt and most current treatment protocols. Do you have one on your team?

REPLY
@sueinmn

@mholm Welcome to Mayo Connect - in our support group you will find people with a full range of experiences ranging from never using antibiotics to being on them for years.

If you have no symptoms at this point, you may be in a good place to try to avoid antibiotics. There is a treatment protocol called "watch and wait" - where you do daily airway clearance, preferably with 7% saline nebs, and your pulmonologist monitors the level of your infection with frequent sputum cultures and periodic CT scans.
Here is an excellent video (long but worth watching) on airway clearance by Dr Pamela McShane, a Bronchiectasis expert at the University of Texas - Tyler:


If this keeps the infection contained, and there is no more damage to your lungs, you can continue in this mode indefinitely. If your infection or lung damage progress, or you become symptomatic, then you explore starting antibiotics.
Here is a current video from National Jewish Health with guidelines on when to treat and when to watch:

If you are following this strategy, it is important to do it under the watchful eye of a specialist experienced in managing Mycobacteria infections. They keep informed of all the besdt and most current treatment protocols. Do you have one on your team?

Jump to this post

In agreement with comments and want to emphasize the importance of airway clearance with 7% saline nebulized. I actually learned about this practice from this group. Watchful waiting was a gamble for me that resulted in significant progression of the disease- However everyone is different. Educating myself through the videos widely available on the topics of Mac and BE has been a helpful strategy. Best wishes for continued health.

REPLY
@marmee26

In agreement with comments and want to emphasize the importance of airway clearance with 7% saline nebulized. I actually learned about this practice from this group. Watchful waiting was a gamble for me that resulted in significant progression of the disease- However everyone is different. Educating myself through the videos widely available on the topics of Mac and BE has been a helpful strategy. Best wishes for continued health.

Jump to this post

When you were watchful waiting, were you also doing airway clearance? I've always been curious about this. Perhaps you could not produce much which makes airway clearance particularly difficult.

REPLY

Correct. I was not producing much mucus. There is no way to tell if it would have made a difference or to what extent, but I had a “do over” I would have nebulized the 7 % saline years sooner; Doing so has been a game changer

REPLY

Yes. That is me also. I’m 66 and thin female. I have had no symptoms. This was discovered on breast MRI for dense breasts. I had two follow up CT of chests that showed this rapidly growing so had bronchoscopy to for biopsy which showed a necrotizing granuloma. I have since had another CT which shows it has gone down from mass to nodule. My Mayo pulmonary specialist says that these things often clear ur body on its own. So go back for another CT in 6 months. So in the meantime bought N-95 masks the surgical kind so splatter resistant so can wear those while gardening or in spa. I had my water testing and MAC is non detectable in water so I think it must be from all soil work I do in lawn and with plants. So no antibiotics for me now and hopefully none in future. Dr says number 1 importance is just to protect your lungs for future exposure. Good luck!

REPLY

I was 63 and had zero symptoms as well when mine showed up on my first ever chest CT to rule out something that ended up nothing. I was super active and was training to thru hike the Appalachian Trail at the time. I started airway clearance and avoidance, but we monitored with CT scans. Over the course of six months, my CTs were declining and the nodules were coalescing, so we started treatment. My bronchiectasis is very mild and very focal, and because we did opt to treat sooner than later, it's remained that way. Five years later, I remain super active physically and can do pretty much anything I want, for which I'm grateful.

Many people are able to hold an infection at bay for years without medication, so good luck! I hope you can kick it to the curb or control it without treatment!

Laurel

REPLY

Interesting discussion! Is it a concern that being diagnosed with BE in spring of '23, throughout my lung yet considered mild , I only treat with an Aerobika/huff cough routine 2 x/day, postural drainage 2-3 x/week and low dose Azithromycin 3 x/week? I have never done a sputum culture or used a nebulizer. Two CT's since diagnosis show no progression of the disease.

REPLY
Please sign in or register to post a reply.