How often should I be tested for MAC

@cholash Are you saying NJH did not find you to have a MAC infection? Maybe you did not have one at the time, that is possible. You did have Bronchiectasis, am I interpreting it correctly form your post, when you went to NJH but maybe you didn't have the infection then with the Bronchiectasis??? Or, I wonder, if it could have been so very low it wasn't detected???
I take it NJH did not suggest you send in sputum every so often after your initial visit???
What sent me to NJH was my BE and it was there that I found out I had a MAC infection, MAI.
I felt well then and I feel well now, yet I had and have an infection. It is at a low load, as yours, so far and I am not, have not taken the antibiotics.
Yes, hard to understand that we could have the infection and feel O.K. However, it could be that it is at low loads and we still feel O.K.?? It probably also depends on how strong our immune system is as to why we feel O.K.???
Barbara

@picartist It is my understanding that people can have Bronchiectasis and not have an infection to start with. That might have been possible when NJH tested for infections.
However, my question would be that when someone goes to NJH to understand ones health and no infection showing, do they suggest and request that person to send in sputum every so often.??? I wonder??
Barbara

@picartist Have you gone there yet? I’m making an appointment for a relative and hopefully will not have too much of a wait. She Ed just diagnosed with a cavitary lesion and MAb. Mayo is about 3 hours away.

@cholash
I was diagnosed last January and while the flutter valve has made me cough some I also have no symptoms. I have abssesus which is very hard to treat. So far it’s watch and wait and trying to gain weight which is so hard for me. I exercise in gym and alternate with pickleball so I am burning excess calories. I feel same way like a monster is growing inside me.

@melinda561 I am waiting on my cultures to see if I need to consult with Cleveland Clinic. I did check online and they have protocols set up for visitors from all over the world apparently.

@blm1007blm1007 My time at NJH gets very mixed reviews . ( sorry for the long explanation, complicated ) BTW I’m 64.

I was sent to NJH due to continuous lung infections . Antibiotics& steroids , a few weeks of improvement , then the symptoms world sky rocket again , repeat . I was hopping around specialists , looking for answers for around 1 1/2 yrs. I was house bound . My last pulmonologist referred me to NJH. I was there over 1 week , tested for everything . Nothing was coming up. The very last day during an endoscopy , the GI doctor found an Inlet Patch in my upper esophagus . An Inlet Patch is an area of gastric tissue - should be in your stomach , not high up in your esophagus . Due to the location , whenever I would eat , acids were coming from the Inlet Patch into my airways . The GI Dr & the pulmonologist overseeing my team of doctors were thrilled to discover this finding , believing if I had it removed , my symptoms would dramatically improve. They also informed me damage had been done from all the infections and it would leave me with a permanent lung disease . . Regardless of the lung disease diagnosis , I left NJH with all the excitement of this Inlet Patch discovery . When home, I had the Inlet patch removed & it was life changing . My chronic infections were gone .
2 years ago ( about 4 yrs after NJH) , I had a pneumonia follow up chest CT and saw that it noted Bronchiectasis . I had never heard of this before , so I started looking at all of my prior CT’s. When I first started having the initial inlet patch infections , the chest CT did not show BE. However , every CT after that first one , including the NJH CT, all indicated mild BE in the findings .
I looked back at my all of my paper work from NJH ( you know how you come home with a book) and I found the letter from the lead NJH doctor to my local pulmonologist . The NJH Dr stated amongst other things , the Inlet Patch finding, BE noted in my NJH CT , and no NTMs found from bronchoscopy testing.

*****Here’s the kicker - no time at NJH did anyone ever mention Bronchiectasis to me or my husband . When I came home , my local pulmonologist never used that diagnosis . She always just said I have “ small airway disease “.
So I went for several years not even knowing I had BE! I didn’t even know what it was!
I don’t know what to make of this with NJH…how they didn’t discuss BE with me. The only thing I can determine is we were all getting very frustrated to keep hitting walls with no answers from all the testing . They had me stay an extra 2 days , and it was that last morning the inlet patch was found . I think at that point the inlet patch became the big focus . Maybe they thought I already knew I had BE..? Idk. I met with that NJH pulmonologist after the scope , she gave her recommendations on the inlet patch removal , and we headed to the airport . It was a fast day.
On a side note , I asked my pulmonologist 2 yrs ago after seeing the BE CT finding , and she basically indicated she knew I had it but was using other wording to describe Bronchiectasis to me .
Long answer , but it’s all been very complicated . The entire thing honestly angers me .
NJH & my local pulmonologist all knew I had BE, yet I didn’t .
However , I will be eternally thankful to NJH for turning all the stones & finding the Inlet Patch .

@cholash Are you saying they did not tell you about nebulizing, air way clearance, huff coughing before you left NJH??
So much can get lost, forgotten and missed due to many factors no matter it be with those close to us, or with medical personnel/doctors etc. etc....and that is always going to cause problems and disturbance. I have a couple of those instances related to my wanting answers and knowing what to do due to the BE, Bronchiectasis ,before my visit to NJH and after the NJH visit due to all the information being overwhelming and all at once.
At this juncture I hope you have more of the answers and understandings that we need to have.
In the big picture for many of us who went to NJH, as I did and you, find that even if there was a omission in the big picture of things it was mostly helpful and mostly worthwhile.
I'm glad I went to NJH and overall you are also, Your learning about the inlet patch that changed things for the better for you was one of those good things.!
Oh your just a kid and then much younger than I when you were diagnosed....when I was diagnosed, I was 80, so here I am at nearly 84. My heart goes out to all those, that have to deal with all we have to do, at a young age. That makes it such a long haul going forward.
We just have to talk positive to ourselves and be determined.
Barbara

@blm1007blm1007 yes, I did meet with respiratory therapy while there , and taught all the nebulizing and airway clearance techniques . Again , I understood I had permanent lung damage , but that’s all I knew. And yes, it was overwhelming at times , moving so quickly each day to the next appt or procedure . That being said , I came home with tons of patient ed materials on everything relevant that they saw important for my lungs.
*But nothing on Bronchiectasis .
When home , I was focused on getting my inlet patch removed . Took 2 ablations to remove it, then Covid hit.
The following 1 1/2 years my local pulmonologist was focused on keeping me from getting Covid ( until vaccine and antivirals, etc were available ) I know it was a very difficult time for her , seeing so many people die.
She had me nebulize when sick , but didn’t stress the importance of it otherwise . Since I didn’t know I had BE, much less even heard of it , I handled the next few years completely different than I do now. Last year, when I actually read the radiologist report ,read Bronchiectasis in the report and started digging into my medical history . , I realized I needed to refresh a lot of what I had learned at NJH, and get a better grasp with my own understanding of this disease . That’s when I recently went to UT Tyler .
Barbara , thank you for your encouragement . No matter the age , we are all in this club together . Take care

@picartist As far as I know, the internist can't determine whether you have MAC or not unless she or he orders a sputum sample, and two samples on two consecutive days if possible, are the least number to have to confirm the MAC. Do you have a pulmonologist well-versed in BE and MAC? If not, you should try to find one close to your area if possible. If you tell the group where you live and ask for referrals near you, there's a good chance you will find someone with real expertise in this area. Someone other than an internist. All the best to you!

Hi all. I am new to this blog but have had BE for 7 years. Got diagnosed before covid. Sputum cultures showed MAC so I took a combo of 3 antibiotics for about 18 months. That was 9 months after we got a clear sputum sample. MAC returned about a year and a half later. I was using an accapella until recently. Now I have had a Staph infection and 2 exacerbation involving pseudomonas aeruginosa. My Pulmonologist says the bacteria most likely doesn't completely get cleared up. I just started using a nebulizer with an Aerobika. This blog was a great source of information. My lungs are apparently a breeding ground for all kinds of nasty things. I am still working at 69 and hope to retire in the next few months. I admire everyone who is dealing with any chronic condition or conditions.