1. < MAC & Bronchiectasis

Sputum test results

Posted by lorrainewenn @lorrainewenn, Jun 27 4:24pm

I was diagnosed withMAC avium in September 2023 and had several positive tests results, the last one March 2024. I have been on watchful waiting since then and on March 13, had my first appointment with Dr Chalmers at the Mayo Clinic. Since I felt good we decided to postpone antibiotic treatment so that I could enjoy my daughter’s wedding in May. Beginning in March, I have had 4 sputum samples tested monthly at Mayo and none have come up positive for MAc avium. I also had a sputum sample test for NJH and that come up negative for MAC avium. I came up positive for MAC septicum at NJH and one sample at Mayo, but many feel like that was a fluke. I do airway clearance 2 times per day with 7% saline, using albuterol. I am clearing a lot of mucus so I’m perplexed as to why I stopped testing positive. I did make some lifestyle changes regarding GERD management, new water treatment system and no gardening, however I’m perplexed as to why I am no longer positive. I have my next appointment with Dr Chalmers next week so the CT scan will tell all. I do have bronchiectasis. Has this happened to anyone?

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narelled23 | @narelled23 | Jun 27 7:46pm

i have heard of people occasionally clearing NTM with airway clearance...maybe you are one of them. Celebrate the good news. Although it often seems to come back, hopefully it won't.

I was diagnosed with MAC in March 24...still trying to clear it of course. My first trip to the specialist the physio suggested I try not nebbing, but just doing huff clearing. Maybe because of the large volume of mucus I was producing...she pointed out that the saline drew fluid which might mean more to produce. I was rather shocked, but wanted to believe I could manage without...two weeks later I was sick and now after another 2 weeks in bed I am just starting to get better...so I am certainly back on twice daily nebbing!

I am very pleased for you.

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1 reply
lorrainewenn | @lorrainewenn | Jun 27 9:34pm
In reply to @narelled23 "i have heard of people occasionally clearing NTM with airway clearance...maybe you are one of them...." + (show)
@narelled23

i have heard of people occasionally clearing NTM with airway clearance...maybe you are one of them. Celebrate the good news. Although it often seems to come back, hopefully it won't.

I was diagnosed with MAC in March 24...still trying to clear it of course. My first trip to the specialist the physio suggested I try not nebbing, but just doing huff clearing. Maybe because of the large volume of mucus I was producing...she pointed out that the saline drew fluid which might mean more to produce. I was rather shocked, but wanted to believe I could manage without...two weeks later I was sick and now after another 2 weeks in bed I am just starting to get better...so I am certainly back on twice daily nebbing!

I am very pleased for you.

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Interesting regarding the saline and mucus production. That’s a good question to ask my doctor next week. I’m worried that if I stop the 7% the MAC will come back so I now do 3.5 in the am and 7 at night.

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1 reply
narelled23 | @narelled23 | Jun 28 10:23am
In reply to @lorrainewenn "Interesting regarding the saline and mucus production. That’s a good question to ask my doctor next..." + (show)
@lorrainewenn

Interesting regarding the saline and mucus production. That’s a good question to ask my doctor next week. I’m worried that if I stop the 7% the MAC will come back so I now do 3.5 in the am and 7 at night.

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However I would prefer to have a little more production (with nebbing) and no infection than the opposite (without nebbing).

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nana43 | @nana43 | Jun 29 8:02am

Hi!
I had MAC AVIUM and went on antibiotics for the 18 months and cleared in Nov 2023. However, I did not produce sputum except during Bronchiectasis exacerbation. Six months after clearing MAC- I had one of these flare ups and sputum tested positive for mycobacterium Abcessus. I haven’t been able to produce viable sample since until last month and still waiting on results. Anyway, I feel great!
I don’t do any nebbing, saline, etc because it doesn’t produce anything. But I do exercise at least 30 minutes a day and live by all the precautions necessary not to get reinfected (ie: masking, hand washing/ sanitizing,only drinking Spring water, boiling all other water, soaking all water faucets/ shower heads in bleach every 2 weeks, etc) Long story short…
I feel good again and I will take that and be grateful and not let the mental part of this disease take up rent free space in my head. Good Luck!! Dee

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3 replies
lilianna | @lilianna | Jun 29 8:24am
In reply to @nana43 "Hi! I had MAC AVIUM and went on antibiotics for the 18 months and cleared in..." + (show)
@nana43

Hi!
I had MAC AVIUM and went on antibiotics for the 18 months and cleared in Nov 2023. However, I did not produce sputum except during Bronchiectasis exacerbation. Six months after clearing MAC- I had one of these flare ups and sputum tested positive for mycobacterium Abcessus. I haven’t been able to produce viable sample since until last month and still waiting on results. Anyway, I feel great!
I don’t do any nebbing, saline, etc because it doesn’t produce anything. But I do exercise at least 30 minutes a day and live by all the precautions necessary not to get reinfected (ie: masking, hand washing/ sanitizing,only drinking Spring water, boiling all other water, soaking all water faucets/ shower heads in bleach every 2 weeks, etc) Long story short…
I feel good again and I will take that and be grateful and not let the mental part of this disease take up rent free space in my head. Good Luck!! Dee

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Nana I am very happy for you. You said 18 months. Is it since starting treatment or after you turned negative. Thank you and stay off mac

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1 reply
nana43 | @nana43 | Jun 29 8:29am
In reply to @lilianna "Nana I am very happy for you. You said 18 months. Is it since starting treatment..." + (show)
@lilianna

Nana I am very happy for you. You said 18 months. Is it since starting treatment or after you turned negative. Thank you and stay off mac

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Hey Liliana
I was diagnosed in April 2022 with MAC, went on treatment for 18 months and bronchoscopy showed negative in Nov 2023.

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helen1000 | @helen1000 | Jun 30 5:23pm
In reply to @nana43 "Hi! I had MAC AVIUM and went on antibiotics for the 18 months and cleared in..." + (show)
@nana43

Hi!
I had MAC AVIUM and went on antibiotics for the 18 months and cleared in Nov 2023. However, I did not produce sputum except during Bronchiectasis exacerbation. Six months after clearing MAC- I had one of these flare ups and sputum tested positive for mycobacterium Abcessus. I haven’t been able to produce viable sample since until last month and still waiting on results. Anyway, I feel great!
I don’t do any nebbing, saline, etc because it doesn’t produce anything. But I do exercise at least 30 minutes a day and live by all the precautions necessary not to get reinfected (ie: masking, hand washing/ sanitizing,only drinking Spring water, boiling all other water, soaking all water faucets/ shower heads in bleach every 2 weeks, etc) Long story short…
I feel good again and I will take that and be grateful and not let the mental part of this disease take up rent free space in my head. Good Luck!! Dee

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If I were not wrong, the antibiotics for MAC also works for MAI. Will you consider other treatment like stem cell therapy, or T cell therapy, or even phage therapy? Take care! 🙏

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lindabourassai | @lindabourassai | Jul 2 11:37am
In reply to @nana43 "Hi! I had MAC AVIUM and went on antibiotics for the 18 months and cleared in..." + (show)
@nana43

Hi!
I had MAC AVIUM and went on antibiotics for the 18 months and cleared in Nov 2023. However, I did not produce sputum except during Bronchiectasis exacerbation. Six months after clearing MAC- I had one of these flare ups and sputum tested positive for mycobacterium Abcessus. I haven’t been able to produce viable sample since until last month and still waiting on results. Anyway, I feel great!
I don’t do any nebbing, saline, etc because it doesn’t produce anything. But I do exercise at least 30 minutes a day and live by all the precautions necessary not to get reinfected (ie: masking, hand washing/ sanitizing,only drinking Spring water, boiling all other water, soaking all water faucets/ shower heads in bleach every 2 weeks, etc) Long story short…
I feel good again and I will take that and be grateful and not let the mental part of this disease take up rent free space in my head. Good Luck!! Dee

Jump to this post

My MAC was diagnosed in 2016 and the pulmonologist stated that I had probably had it for quite a while from what he saw in the X-ray which means that I have had it for over 10 years. I am allergic to to the big 3 meds to the point that after taking them for a week I was bedridden and lost 10 pounds and had to stop taking them. Also Arycace made me exhausted. I went to NJH as an out patient for a week where they did every test that they could think of and the only thing Dr. Daley and Dr. Eddy said for me to do is to nebulize twice a day and live a healthy life style. I am also one of those people who does not produce much sputum even when I use the nebulizer with 7 percent solution although I do produce a bit in the morning when I wake up. Amazingly at age 84 I am pretty healthy and the only noticeable problem I have is shortness of breath even when I walk quickly or do any type of exercise.

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Rick | @rstel7272 | Jul 3 6:30am

Linda, Just curious, how did you manage to get see both Dr Daley and Eddy? -Rick

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lindabourassai | @lindabourassai | Jul 4 3:29pm

It was in October 2022. Dr Daley was leaving as the primary MAC doctor and Dr. Eddy was taking over. Linda

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