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

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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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