What is the prognosis for mac and bronchiectasis?

@robyn13 hi Robin ,
I am an artist as well and also had the same fears of losing visions and hearing .My NTM was a Cavitary mass ,so I tried the required 4 antibiotics and 1 via a PICC line .I couldn’t even do it a week because I was living in the bathroom .
I decide to choose quality of life instead of one that would torture me .
I then had a robotic lung resection ……and cut it all out .
I am fine for now and my last CT was clear and I am living my life .(no antibiotics).
Please do some research and see what is available for your specific condition, because my Pulmonologist told me I couldn’t do the surgery unless I was on a year of it or two of antibiotics. I didn’t listen and chose to do what I thought was best……Good luck !…it’s your life !!
,!

@robyn13 Mayo Connect is this support group, and you are part of the MAC & Bronchiectasis Group. We have over a thousand members from around the world in the group, sharing their experiences and offering resources.

If you are like most of us, when you heard " low-grade mycobacterial lung disease" you likely said "What??" And if you told friends and family, they said "Never heard of it", so you turned to Dr Google, which is how I found Mayo Connect and this resource.

Here is and excellent video about when and whether to treat MAC with antibiotics:

Some members have remained at the "low-grade" level for a very long time without antibiotics, and some have even had the infection clear with regular airway clearance, saline nebs, and no antibiotics.

What does your lung CT show as far as severity of infection? (Nodules, cavities, ground glass opacities, etc...) Do you have other symptoms? (Cough, fatigue, weight loss, fever, etc...)

@robyn13 I was diagnosed in 2022 with Bronchiectasis at age 79. after my Primary Care Doctor ordered the C Scan. due to my weight loss and my seeing him several times in the year and a half and saying "something is wrong."
So far I have not developed cavitary lesions etc. and overall have felt well before diagnosis and to today. Since then a three day battle with Covid but that is it.
I was diagnosed with Mycobacterium Intracellulare in Oct. of 2023 with my visit to National Jewish Hospital/Clinic.
National Jewish put me on 'watchful waiting" due to the bacteria/infection being on such a low load.
I continue to stay on "watchful waiting." In my case I have not had any other type of infection found so far and the load has stayed low.
I do the nebulizing, airway clearance methods, and percussion therapy.
I try to eat healthy, take supplements like vitamin D and magnesium etc. For me I mask with an N95 mask most all the time when in public, meaning my being around many people and try to keep my distance when not masking. I sure don't want something else to deal with while needing to do what one does to clear the mucus out of the lungs.

I, with the help of this groups insights, decided..... not to .....start the antibiotics although 4 pulmonologists suggested them and one has not just a few months ago due to the big picture .......meaning the C Scan results, how I feel, the low load of infection etc.

I believe one needs to learn more for their own knowledge and self and greater understanding, know that generally speaking we know what is best for ourselves and go with our gut feeling, (I'd rather make a mistake than have some one make a mistake that would affect me) and then decide what to do. As we know we shouldn't jump into anything without some deep thought and understanding. Try to read some of the threads on this site to help you understand the big picture.

Mycobacterium Intracellulare is a slow growing bacteria.
Hope this helps in the difficult question of "what do I do."
Barbara

@robyn13 Robyn,
I had both a local doctor and a local Infectious disease doctor and the ID Dr prematurely put me on some very nasty antibiotics. Fortunately, I went to National Jewish in Denver (they are the leaders in MAC/BE healthcare), 2.5 weeks into my antibiotic course. NJH, after a week, told me I could go off the antibiotics and do "watchful wait". People can be on watchful wait for years, some people, especially if they nebulize and do ACT, don't ever need antibiotics! Does your doctor know your "count"? If not, that should be a huge red flag. NJH ID Dr told me they consider a count over 400 to be high. My count was 32. My last 8 counts have been 32, 0,0,0,22,8 (solid culture), 8 broth. These are very low numbers and do not require antibiotic therapy. Watch and wait is where you are followed with CT scans, sputum cultures, and general health assessments-how you feel. Please keep in mind, some people never need antibiotics. According to Dr. Daly (NJH), there is only 5 years of data assessing the likelihood if antibiotics are needed. I don't recall the number but think it was between 15 and 25%. Also, the research was not done in the US (Korea comes to mind) and Dr Daly did not know if they were nebulizing. Some studies have supported clearance without antibiotics as high as 25% while nebulizing-that said, the studies had small groups. I would highly recommend (if you're not already) that you go to a Clinic that specializes in NTM/BE infections.

I was diagnosed with bronchiectasis in 2019 and have been nebulizing with percussion ever since. I also have a Pseudomonas infection which is colonized. I use inhaled antibiotics, two weeks on and two weeks off. My problem is the fatigue which keeps me from doing what I want to do. If I overdo one day, I am wiped out the next day. This may be something I have to live with, but if anyone has a suggestion for dealing with the crushing fatigue, please let me know.
Thanks
susanerobinson

@susanerobinson
Some have gotten fatigue relief with the new bronchiectasis drug called Brinsupri. Ask you pulmonologist about it.

I wax diagnosed with MAC 11 years ago and have had two 18 month periods of antibiotic therapy, multiple bronchoscopies, CT scans, labs…overall I’m doing very well. My pulmonologist recently told me bluntly that I won’t die from MAC but I’ll die with it, which actually gave me some relief to hear!

@jfull57 Did the 18 month period of antibiotics clear the MAC and not returned.
Do you remember what exact name of the bacteria/infection that it was??
Barbara

@blm1007blm1007
Barbara
After both periods of antibiotic therapy MAC returned. My pulmonologist said since the antibiotics haven’t worked for me there’s no reason to try another round. My ID doctor offered the newest treatment but cautioned me that the side effects were significant, so I declined at this point to try it. I had a severe reaction to Rifampin with the second course of antibiotics and couldn’t continue with it. I believe the specific bacteria infection was MAC but it took at least three months to determine that. The last CT scan showed no new nodules and some reduction in size of the existing nodules so I feel comfortable with maintaining the status quo.
I hope this helps with your questions regarding prognosis.
Janet

@jfull57 Yes, thank you.
I have the Intercellular infection/bacteria at a low load and continue to stay off of the antibiotics with having begun watchful waiting after my week long visit at National Jewish in Denver, Oct. 2023, with the doctor prescribing "watchful waiting."
Always waiting anxiously for each sputum test result and hoping I am keeping the infection at a low load.
Thank you for clarifying your experience. That information was needed.
Some are able to rid themselves of the infection after the antibiotics and then it shows it's ugly face again. So the reason for my questioning. Thanks.
Barbara