1. < MAC & Bronchiectasis

New to MAC and considering treatments options: What did you do?

Posted by ajwelsh @ajwelsh, Aug 11, 2022

Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!

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

harrynsc | @harrynsc | Nov 30 11:53pm
In reply to @liangni1 "I found the portable rechargeable nebulizer on Amazon ：Naweti" + (show)
@liangni1

I found the portable rechargeable nebulizer on Amazon ：Naweti

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I just got the Naweti a week ago for a short trip. It's great! Fast, quiet, light weight. The only negative is the mouthpiece gets condensation inside and drips.
Harry

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lsm1936 | @lsm1936 | Dec 4 3:55pm

Shocking that the doctor would be so uncaring. Get a new one right away. I was referred to a specialist by my PA who jumped on doing a CT scan immediately. My symptoms were a terrible constant cough, middle of the night sweats and mucus in my throat. The scan showed the bacteria in my left lung so he did a bronchoscopy, took some samples, ran the tests and came up with MAC. Even tho I am 88 years old I have a very strong immune system so I to the albuterol for my asthma, Advair HFA (two puffs in the AM and in the PM) and have found that several herbal teas help as well. Organic Green Tea, Mullein Tea and Licorice Root are recommended for lung problems. I did see an infectious disease specialist but opted out of the "Big 3". Suddenly the cough is gone as well as the throat mucus and finally the night sweats. I still have days now and then when I wear out but those are fewer and further apart. I sleep well and do eat quie a few veggies and fruits. A glass of wine each evening with my husband in the hot-tub is good therapy for me altho hot-tubs are not recommended. Hubby makes sure the water is clean!

I will have another CT scan was nearly 3 months ago and it showed fewer thingies in the lung and will be having another the first of the year. I am told I will not die from MAC but probably die with it - so for now those antibiotics are not in my future. Hopefully, things will do a turn around for you and all others as it is a scary thing to think about.

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riverstoni | @riverstoni | Dec 4 5:29pm

I have had bronchiectasis for more than 15 years. In September, the cultures from a broncosopy revealed MAC… along with pneumonia and blood clots in both lobes of my lungs. I was immediately put on the big three drugs. I have been so sick ever since. I run low grade temps 3-4 days a week. Nausea and diarrhea the days I take the antibiotics. I am also on a blood thinner. All new to me. Am using oxygen as needed.

I firmly believe the cure is worse than the disease. I have not left the house for months. Please advise.

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1 reply
highlands1946 | @highlands1946 | 4 days ago
In reply to @sueinmn "Hello - As someone who was seen and treated by a less than communicative pulmonologist first,..." + (show)
@sueinmn

Hello - As someone who was seen and treated by a less than communicative pulmonologist first, and now have found an excellent team, I can tell you there are probably more pulmonologists who don't know much about MAC than there are skilled in treating it. To have him dismiss you like he did, I would guess he is in the don't know group. Not surprising because MAC is considered a rare disease, and is far less common than the asthma/COPD/emphysema trilogy that are the most common diagnoses.

So, the question becomes what to do next - following once a year is not a good recipe for lung health in my opinion. You need to know if you have another underlying lung condition like bronchiectasis, Cystic Fibrosis, COPD or chronic asthma. If so, you need proper treatment for that - airway relaxing meds, an airway clearance routine, and regular monitoring. You need a plan for dealing with breathing difficulties. You need a plan for when to contact the doc & how your MAC will be monitored. Most of all you need good and open communication with the treating doc or someone in their practice.

So, do you have any other lung conditions or a history of frequent pneumonia? Do you have access to a large group pulmonology practice or teaching hospital where you can look for a new doc?
Sue

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Try Dr Colin Swenson at Emory . He speaks clearly and knows his stuff. I change pulmonologists pretty quickly, reached it, researched it online, and saw Dr. S. I've never looked back. First, you need to ask,what is an accurate diagnosis? Then if you get one, know MAC is treatable but not curable. Good luck.

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pacathy | @pacathy | 4 days ago
In reply to @riverstoni "I have had bronchiectasis for more than 15 years. In September, the cultures from a broncosopy..." + (show)
@riverstoni

I have had bronchiectasis for more than 15 years. In September, the cultures from a broncosopy revealed MAC… along with pneumonia and blood clots in both lobes of my lungs. I was immediately put on the big three drugs. I have been so sick ever since. I run low grade temps 3-4 days a week. Nausea and diarrhea the days I take the antibiotics. I am also on a blood thinner. All new to me. Am using oxygen as needed.

I firmly believe the cure is worse than the disease. I have not left the house for months. Please advise.

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I’m sorry we missed your post for a while. When they’re on older threads, they can get buried. It sounds like you’re having a tough time and I’m sorry for that.

Questions
Are you being seen by a doctor that sees a lot of MAC patients? An infectious disease doc?
I hope you’ve been in contact with you team since you posted this. They should have ideas for managing the side effects and/or adjusting frequency of meds. I don’t have MAC, but many of patients on this group take probiotics or eat yogurt to help with diarrhea.
Are you doing the airway clearance so often mentioned here?. Getting that mucus out helps your lungs provide more oxygen to your body and less likely to grow bad organisms.
Let us know how your are.

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