Do Bronchiectasis and MAC go together?

@russt, Hello Russ. Haven't heard from you since May, and I am wondering if you were able to get an appointment with Mayo? I hope that you did. Are you still taking monthly maintenance antibiotics? I apologize for not checking back in with you sooner. How are you doing right now?

@russt, Hello Russ. Haven't heard from you since May, and I am wondering if you were able to get an appointment with Mayo? I hope that you did. Are you still taking monthly maintenance antibiotics? I apologize for not checking back in with you sooner. How are you doing right now?

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

This is my first post, although I have been lurking for a while. I was diagnosed with bronchiectasis several months ago after many years of symptoms of coughing and respiratory infections (fortunately not all that frequent or severe but still a concern). About two years ago I started asking my asthma/allergy doctor why my breathing was getting worse, but he didn't have any answers. First lesson learned: be persistent and be your own advocate. Finally last year I asked my PCP for a referral to a pulmonologist. I now feel as though I am in good hands with my pulmonologist here in Rhode Island. A CT scan confirmed his preliminary diagnosis of bronchiectasis, which I had never even heard of. Had I known that my airways were sustaining permanent damage every time I contracted what I thought was bronchitis, I certainly would have pursued seeing a pulmonologist sooner.

In early May I submitted three sputum samples. I knew from reading on this site that I would need to wait six weeks for the results, so I didn't follow up, even though every day in May I was progressively coughing more, feeling more fatigued, etc. I had an appointment with the pulmonologist for early June so thought I would stick it out. Wrong! When I finally felt too sick to function, I called the doctor only to find out that the quick test (smear) showed that I had staphylococcus in my lungs. This test result had been available only a few days after I dropped off the sample but I didn't know until three weeks later. Second lesson learned: follow up; don't wait for a call from the doctor. Now that I registered on the local hospital network online portal, I will be notified whenever a test result is available. Fortunately the staph was taken care of with a 7-day course of Moxifloxicin. Third lesson learned: recognize an exacerbation early.

While waiting six weeks for the results of the AFB to see whether I had MAC, I spent lots of time reading the posts on this forum and watching the videos from National Jewish and Georgetown. Even though my doctor takes time with me, it has been so helpful to know the terminology, typical treatment, etc. Fourth lesson learned: be an educated patient. I would like to thank @katemn, @windwalker, @Paula_MAC2007 and others who have helped make me an informed patient.

This Wednesday I learned that I do not have MAC, for which I am grateful. I am impressed by the dedication and tenacity of those of you with MAC who are following strict regimens of antibiotics, nebulizers, etc. At this point my treatment is comprised of Mucinex (generic), Albuterol, another inhaler and an Aerobika, with antibiotics only if I have an exacerbation.

Thanks for letting me ramble!

@peggyri

Peggy,

I am about to begin taking moxifloxacin for my MAC, which is not responding to treatment with the big three plus clofazimine and arikayce. If you have a moment, please let me know of any adverse effects or side effects from the moxifloxacin. I'm scared because so many are listed in the medicine print out that comes with the pills.

Thank you in advance!
Mokie

Hi Colleen, Thank you for your reply. I am just wondering what percentage of people with bronchiectasis have or develop MAC as that is what is most of the posts are about. I have some sputum production but very seldom and no other symptoms that I can tell. No testable decreased pulmonary function. Am on nebs and aribika now. Had second Ct scan that shoes bronchiectasis with numerous mucous areas and one nodule that they are following for changes. Does that mucous sitting down there create infection that doesn't create overt symptoms? I have tried to get ahold of my clinic to clarify things but they are not responding and I won't be seen for 3 to 6 months. I am registered to eventually come to Mayo but was going to wait til fall. Now think I should try to get in sooner. Just presenting the thoughts that roll through my head. Thanks for this site and listening.:)

@conniec, so glad you found the forum. You will find lots of great information here just by reading through the past and present post that others share. There is a news letter that's called Bronchiectasis news today. Its fairly new and free to sign up and full of really good stuff. You can search for and print articles that interest you. There are also seminar videos for 2015 & 2016 that National Jewish Health sponsers and hosts. Its for health provider's, Patients, families and friends and can be watched in small increments or a whole day. There is nordphysicianguids.org/nontuberulous-mycobacterial-lung-disease-ntm/ its from The national organization for rare disorders and is good easy to understand info. The american thorasic society, American lung association, and of course the mayo clinics website all are good references. You cant get all the little tid bits of priceless information that poeple in this forum share anywhere but here. So I hope this helps and keep coming back.
Becky