Does MAC cause abdominal pain? Med or not? Airway clearance device?

Posted by helen1000 @helen1000, Nov 21, 2023

I was diagnosed as MAC preliminary stage in November 2022 when I was only 46. As I don't have many symptoms except morning sputum ( a few drops mostly white + some yellowish) , slight cough during the day , slight fatigue and slight abnominal pain after exercise. The doctor says I can wait until my disease progress to decide whether I should take antibiotics. I think the main reason is that my sputum is negative for now.

I may be the youngest in the group. But I was premature born and had many pneumonia when I was 0-1 year old, I believe my immune system is not strong as most people. I also took a lot of anti-biotics when I was younger. So I believe I have resistance to certain anti-biotics already.

I also did many research on anti-biotics. It is very hard to cure MAC because of antibiotics resistance. Patient will not tolerate the long-term treatment and will give up after a few months. Even if it is effective, MAC may come back some day. Antibiotics will further damage immunity systems and mine is already not strong plus my BMI is only 19.

Does anyone in this group have abdominal pain? It will appear if I exercise too much and feel fatigue. I give up my 50 mins jogging and walk instead. It is slight pain but annoyed.

Should I take antibiotics or not? I am taking thymosin alpha 1 peptide, which triggers T-cells and fight off infection/ inflammation. At least it helps me stay in current condition and not progress quickly. I do feel gradual progression even if I am taking the peptide in the past one year.

I always feel I have sputum stay in my throat but I can't cough or spit them out. Though it does not bother me much, I do wish there is a way I can clear out my lung every day to reduce the mucus. Is there any device you can recommend? Without medication, just physically help me clear out the mucus in my lung.

Thanks for the input in advance.

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

Sue, Volunteer Mentor | @sueinmn | Nov 22, 2023

@helen1000 Welcome to Mayo Connect. Thank you for providing some background - it is helpful for others wishing to reply to you.
I am curious about your diagnosis of "MAC preliminary stage" since your sputum cultures are negative - that most usually means you do not have MAC. What led to this diagnosis?
Perhaps you have early stage Bronchiectasis which is not uncommon in someone who had pneumonia several times?
The sputum/mucus you report is really typical for one with Bronchiectasis since our lungs do not work properly to expel it.
I see you have done some reading - have you read here or elsewhere about airway clearance? It is a technique we use to force the mucus out of our lungs. This is very important because that mucus is a breeding ground for MAC and other infections.
Here is an excellent video about the reasons for airway clearance and methods to use, by Doctor Pamela McShane, one of the leading experts on Bronchiectasis and NTM (another term for MAC). It is long but well worth watching

Finally, it is important to find a pulmonologist who is familiar with MAC and Bronchiectasis, both rare diseases, to get the best treatment. You were asking in another post about National Jewish Health - it is a center of excellence, but there are several others around the country, so it may not be necessary to travel to Denver.
Sue

helen1000 | @helen1000 | Nov 22, 2023

Thanks a lot Sue for your quick reply! Really appreciate it. To your question, I did bronchoscopy last November ( because I have tree buds nodularuty in both lungs and a cavity nodule) they did it and found out the MAC in my lung. As my sputum is negative, it is preliminary stage. You are definitely an expert in respiratory disease - From CT, they said I have slight bronchiectasis. So I will definitely follow your video for airway clearance. Thanks again for providing this information for me.
I also will see a doctor in NYU lagoon which ranks third in the county in pulmonary disease. My mother died of lung cancer last year. My grandfather had TB . My whole family is slim, guess we are all high in leptin.

I am on my way to Atlantic City with my family. I will watch the video and provide an update !!

Happy Thanksgiving Sue and other members. I am seriously considering anti- biotics now but still dedicated to find an alternative.

helen1000 | @helen1000 | Nov 25, 2023

Good morning,

First of all, thanks Sue for your airway clearance information, I have ordered an aerobika and a baby bottle sterilizer for airway clearance , though no black Friday deal 🙁 from Amazon.

Except Aerobika and nebuizer with 7 percent saline. Do I need anything else?

In addition, I found four clinical trials conducted by NYU Langone.

One of which is how saline 7 percent will help MAC.
As my sputum is still negative, I am not sure whether I am qualified. But I would like to post this info for everyone else in this group. I will also talk to the pulmonologist in NYC Langone for other trial options.

There are a few other trials for MAC and refractory MAC im above link. If anyone interested, please feel free to search NYU Langone clinical trial, put into search bar, MAC, and it will return four results.

Colleen Young, Connect Director | @colleenyoung | Nov 25, 2023

In reply to @helen1000 "Good morning, First of all, thanks Sue for your airway clearance information, I have ordered an..." + (show)

Hi @helen1000, I noticed that you wished to post a URL to a summary of clinical trials with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post it for you:
- NYU Langone Healt: MAC clinical trials https://clinicaltrials.med.nyu.edu/clinicaltrials/search/?q=Mac