Mac & Asprillia Niger

Posted by clynnford @clynnford, Dec 6, 2022

Anybody out there have both of these cultures show up positive? I also have bronchiectasis. All were just diagnosed….Wondering which to treat first? I have only had one appointment with a NP. and he went right for the big 3 to treat MAC but honestly I think treating the fungus first makes more sense… waiting to hear what the Dr. says. He ordered another sputum test even tho I just had one in late October….

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

@clynnford Hello, Bronchiectasis and the associated infections are a constantly evolving puzzle for many of us. The answers of which infection to treat and when is "It depends."

You say you had one appointment with the NP – was this in the pulmonology office or at your primary? I ask because there are protocols for treating MAC and aspergillus found in a sputum culture, depending on other findings like symptoms and the condition of our lungs. These may not be well known to someone not well-versed in bronchiectasis, and they may jump right into antibiotic treatment as the first step.

I have been diagnosed on various cultures with aspergillus, MAC and pseudomonas. The aspergillus disappeared on its own – probably with daily nebs and airway clearance, it was an "incidental" finding in one culture. The pseudomonas took 3-4 courses of various antibiotics over 2 months to leave. The MAC was still present after 18 months of the Big-3, at which time my docs & I stopped antibiotics due to their side effects, even though the cultures were still positive for infection. With 7% saline, airway clearance and vigilant control of my asthma & bronchiectasis, I have stayed healthy for 3 years as of next week. My pulmonologist says the CT still looks clear of any obvious pockets/cavities of MAC. A number of people on Connect are like me, we watch and wait to treat, and do airway clearrance.

When you were diagnosed with bronchiectasis, were you instructed in how/when to do airway clearance to help keep your lungs clear?
Sue

REPLY
@sueinmn

@clynnford Hello, Bronchiectasis and the associated infections are a constantly evolving puzzle for many of us. The answers of which infection to treat and when is "It depends."

You say you had one appointment with the NP – was this in the pulmonology office or at your primary? I ask because there are protocols for treating MAC and aspergillus found in a sputum culture, depending on other findings like symptoms and the condition of our lungs. These may not be well known to someone not well-versed in bronchiectasis, and they may jump right into antibiotic treatment as the first step.

I have been diagnosed on various cultures with aspergillus, MAC and pseudomonas. The aspergillus disappeared on its own – probably with daily nebs and airway clearance, it was an "incidental" finding in one culture. The pseudomonas took 3-4 courses of various antibiotics over 2 months to leave. The MAC was still present after 18 months of the Big-3, at which time my docs & I stopped antibiotics due to their side effects, even though the cultures were still positive for infection. With 7% saline, airway clearance and vigilant control of my asthma & bronchiectasis, I have stayed healthy for 3 years as of next week. My pulmonologist says the CT still looks clear of any obvious pockets/cavities of MAC. A number of people on Connect are like me, we watch and wait to treat, and do airway clearrance.

When you were diagnosed with bronchiectasis, were you instructed in how/when to do airway clearance to help keep your lungs clear?
Sue

Jump to this post

Sue,
Thank you for your reply. The NP was with my ID Dr. and after that initial app. the ID Dr. ordered another sputum culture, I'm on day 2 with that now and have my follow up appointment at the end of the month. My daily symptoms are chest/back pain, night sweats, coughing fits that come and go along with low grade fever & fatigue. Mostly my energy levels are unaffected. My Pulmonologist did perscribe saline for nebbing daily and my PC prescribed abuteral which I use every other day, makes me jittery. However with this, my airway clearance is sooo much easier. Yes, my pulmonary Dr. recommend I watch YouTube videos for these techniques.
From what I have read the Asprilligous seems more serious, yet common as you have described. Sounds like the CT scan is the only tool to really know how bad any of this really is. My next scan is in April….
Respectfully,
Cheryl

REPLY
@clynnford

Sue,
Thank you for your reply. The NP was with my ID Dr. and after that initial app. the ID Dr. ordered another sputum culture, I'm on day 2 with that now and have my follow up appointment at the end of the month. My daily symptoms are chest/back pain, night sweats, coughing fits that come and go along with low grade fever & fatigue. Mostly my energy levels are unaffected. My Pulmonologist did perscribe saline for nebbing daily and my PC prescribed abuteral which I use every other day, makes me jittery. However with this, my airway clearance is sooo much easier. Yes, my pulmonary Dr. recommend I watch YouTube videos for these techniques.
From what I have read the Asprilligous seems more serious, yet common as you have described. Sounds like the CT scan is the only tool to really know how bad any of this really is. My next scan is in April….
Respectfully,
Cheryl

Jump to this post

Hello Cheryl – It sounds like you are in very good hands. As for the airway clearance with albuterol making you shaky, if you are using an albuterol neb, ask about trying an inhaler with a spacer instead – less drug can equal less shakiness. Or an alternative med is levalbuterol, less commonly used because it was a name brand (Xopenex) and very costly – there is a generic now, and it is what I use as my rescue inhaler or neb.
Airway clearance is totally the key to managing bronchiectasis, even though it is a pain to do every day – keep up the good work.
Sue

REPLY

I was diagnosed with both Aspergillis Niger and MAC as well, from a bronchoscopy. My pulmonologist decided to treat the Mac because of my symptoms and CT scan worsening after three months. She felt the Aspergillis was colonized, which from my research, is not that uncommon. I have been on the Big 3 for 2 weeks…

REPLY
@sueinmn

Hello Cheryl – It sounds like you are in very good hands. As for the airway clearance with albuterol making you shaky, if you are using an albuterol neb, ask about trying an inhaler with a spacer instead – less drug can equal less shakiness. Or an alternative med is levalbuterol, less commonly used because it was a name brand (Xopenex) and very costly – there is a generic now, and it is what I use as my rescue inhaler or neb.
Airway clearance is totally the key to managing bronchiectasis, even though it is a pain to do every day – keep up the good work.
Sue

Jump to this post

Dear Sue,
I've also experienced shakiness with nebulizing albuterol. I asked the Dr. at my last visit, and he suggested using only half the vial. He also said that we could decrease the strength. I currently have the 2.5 mg/3 ml. Is that the strength most often prescribed? Do you like the levalbuterol better? What is an inhaler with a spacer? Also, I remember reading not too long ago that some people have problems with 7% saline causing coughing when nebulizing. I have been experiencing that and get frustrated with it, because I constantly have to stop and drink and wait a few minutes before resuming. Any other suggestions? Is 7% much more effective than 3%? If so, maybe I should just hang in there. Thanks for all your great advice!
Donna Turnbaugh

REPLY
@srsmith3802

I was diagnosed with both Aspergillis Niger and MAC as well, from a bronchoscopy. My pulmonologist decided to treat the Mac because of my symptoms and CT scan worsening after three months. She felt the Aspergillis was colonized, which from my research, is not that uncommon. I have been on the Big 3 for 2 weeks…

Jump to this post

Hello,

I have read that the symptoms are about the same for Mac and Asp.

Cheryl

REPLY
Please sign in or register to post a reply.