Options if MAC goes untreated

Posted by goatlady @goatlady, Feb 22, 2021

MY ID Doctor took me off the "BIG 3" last October because I wasn't able to produce any sputum (never have). Had a CT-Scan done in January showing the MAC is still and Bronchiectasis has gotten worst. My Pulmonary Doctor got in touch with ID Doctor about putting me back on the "Big 3". The ID Doctor won't, she called in a prescription of propranlol. Many years ago another doctor prescribed that for me. I had the worst reaction to that. There is no way I am going to try that drug again. So what happens if I don't treat the MAC?

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lilianna | @lilianna | Sep 5 8:16am

In reply to @sueinmn "Today - waiting on results - I see my new pulmonologist in 2 weeks" + (show)

My thought are with you, Sue. You are so positive and give us strength. Thank you for all you do for us and your time to search and answer so many questions.

blm1007blm1007 | @blm1007blm1007 | Sep 5 8:20am

In reply to @sueinmn "Today - waiting on results - I see my new pulmonologist in 2 weeks" + (show)

Sue- Do you have sputum tests monthly or otherwise?
Unless there has been a misunderstanding I am of the understanding, which I have done, I am to send sputum tests monthly....since January 2024. Maximum results shown in colonies was 7 and the last one shown as 1+. Not told time for antibiotics....that's a good thing. Looking forward to the C Scan in October to see what the lungs look like since the last two C Scans.
Barbara

irene5 Irene Estes | @irene5 | Sep 5 8:20am

In reply to @larrycmb "Good Luck My wife has been on 2 different sets of 3 and 2 of them..." + (show)

@larrycmb I did the Big3 on again off again Finnegan for many years. I still had MAC and little luck with those drugs due to side effects. Thats me!! Lots of people have no problem. When I was in a clinical trial for Arikayce for I want to say at least 18 months I did not have bad side effects from it. It was time consuming for sure. But Arikayce cured the MAC. I also understand Sue’s point of view. Each of us is different. I had “known” MAC for at least 7 years and probably longer. Arikayce got rid of it !! Good luck to your wife. Irene5

Sue, Volunteer Mentor | @sueinmn | Sep 5 10:31am

In reply to @blm1007blm1007 "Sue- Do you have sputum tests monthly or otherwise? Unless there has been a misunderstanding I..." + (show)

@cwal @pacathy @lilianna @rstel7272 Thank you all for the kind words. This is just prep for my new Pulmonologist.

I got the portal message last night that we all hate: "Inadequate Sample, testing halted" Grrr...so I'm working today to produce a new and better one.

I have not had a CT or sputum culture since 2021 - no symptoms, only 2 exacerbations, and I produce little sputum, so the old pulmo wouldn't order one. Those showed reduced nodules, no cavities or opacities and minimal (less than 1+) bacteria at 8 weeks.

Rick - this is my first test for this new Pulmonologist - she accepted me into her closed practice when her partner retired a year early. She wants to see "where we are today" and said she orders regular CTs & sputum tests for her patients, frequency determined by her exam and test results.

So, back to the neb & second round of 7% saline today.

lilianna | @lilianna | Sep 5 12:01pm

Sue, sputum production is my problem too. What I do recently I use sodium chloride 7% and a vest at the same time. I noticed this is the only time I produce clear stuff which I cough up, not even huff coughing because mucus comes - if there is any. Then after 15 -20 minutes I attach aerobika to aeroclipse and when sodium chloride is finished I stop the vest, remove aeroclipse and continue with aerobika only. Usually it’s the end of producing anything to cough up but I do it anyway with hope it helps somehow to stay stable. I think dr Shane is right about using sodium chloride alone but I shake myself with the vest too. You never know what day what works. But I hope you will be able to spit something. The day before planning to get a sputum sample I get really anxious if I can produce enough or at all. So I hope you are lucky today. My best

Sue, Volunteer Mentor | @sueinmn | Sep 5 3:36pm

In reply to @lilianna "Sue, sputum production is my problem too. What I do recently I use sodium chloride 7%..." + (show)

2 rounds of 7% saline did the trick - waiting on word from the lab, but the tech thought it looked good. I am not a candidate for the vest due to arthritis in neck & spine. I'll get a new Aerobika from my doc - the one I have is very weak now - one of the reasons I was happy to see Dr Falkinham's study showing daily sterilization is unnecessary - it is hard on devices.

cwal | @cwal | Sep 5 9:18pm

In reply to @sueinmn "2 rounds of 7% saline did the trick - waiting on word from the lab, but..." + (show)

Somehow I missed seeing that study. Do you have a link or website for that?

blm1007blm1007 | @blm1007blm1007 | Sep 5 9:19pm

In reply to @sueinmn "2 rounds of 7% saline did the trick - waiting on word from the lab, but..." + (show)

Sue- Glad to hear you were able to produce sputum and that it appeared to look good enough for full testing. Also sounds good, the new doctors desire to see "where we are today" for you.
I had a problem with the vest, sore ribs. I have laid off of it for a while and do self percussion, postural and autogenic drainage. So far so good....as far as I can tell. For myself it appears I produce what is needed by clearing mucus and mucus plugs out from the lungs and further give samples for testing. My problem is having the mucus all day long and needing to clear the throat. As a matter of fact it now has become a proud moment for me when I see I have brought up mucus plugs into my clear solo cup.....who would a thunk it.....that something like that would be a proud and happy moment.!
Looking forward to hearing you are pleased with all test results.
Barbara

suzyqueue | @suzyqueue | Sep 6 7:15am

In reply to @larrycmb "Good Luck My wife has been on 2 different sets of 3 and 2 of them..." + (show)

Arikayce is what changed the game in my improvement and what has kept me stable. The damage the MAC can do is worse than any side effect. The Arikayce takes some getting used to but its very much worth the try and transition.