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MAC again

Posted by shifra @shifra, Feb 23, 2019

It's 7 years since I finished the MAC cocktail and it seems the MAC has returned. Is it too soon to go back on that cocktail? I was very sick with it at that time and don't know if I can survive another 18 months. Are there any other options?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 24, 2019

Hello Shifra - Everybody is different, with their own physiology & other medical conditions to consider. Was the return of MAC diagnosed with multiple sputum specimens, or is this an assumption based on symptoms? I would be sure the MAC showed up in multiple cultures, and that sensitivity tests were conducted before I even considered the meds a second time. There are people on this list (like Terri) who have worked out alternative regimens with their doctors. Make sure you have a pulmonologist and/or infectious disease specialist who is well-versed in MAC on your treatment team. Good luck!

REPLY
1 reply
BlueSplashGirl/ Carolyn | @bluesplashgirl | Jan 5, 2023
In reply to @sueinmn "Hello Shifra - Everybody is different, with their own physiology & other medical conditions to consider...." + (show)
@sueinmn

Hello Shifra - Everybody is different, with their own physiology & other medical conditions to consider. Was the return of MAC diagnosed with multiple sputum specimens, or is this an assumption based on symptoms? I would be sure the MAC showed up in multiple cultures, and that sensitivity tests were conducted before I even considered the meds a second time. There are people on this list (like Terri) who have worked out alternative regimens with their doctors. Make sure you have a pulmonologist and/or infectious disease specialist who is well-versed in MAC on your treatment team. Good luck!

Jump to this post

Hi Sue,
Once again my sputum had been negative for a few sputum test (and then positive and negative again) and now positive. What are your thoughts on these ups and downs? I see my infectious disease doc in Feb and decided I won’t go back on the big 3 again. Obviously it doesn’t work for me and after ototoxicity from Azithro I am done having the “cure” be worse than the disease. Is it common to have positive and negative sputum ad infinitum? Sorry for the frustration seeping out. I just can’t do it for a third time.
Thank you! Carolyn

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 5, 2023
In reply to @bluesplashgirl "Hi Sue, Once again my sputum had been negative for a few sputum test (and then..." + (show)
@bluesplashgirl

Hi Sue,
Once again my sputum had been negative for a few sputum test (and then positive and negative again) and now positive. What are your thoughts on these ups and downs? I see my infectious disease doc in Feb and decided I won’t go back on the big 3 again. Obviously it doesn’t work for me and after ototoxicity from Azithro I am done having the “cure” be worse than the disease. Is it common to have positive and negative sputum ad infinitum? Sorry for the frustration seeping out. I just can’t do it for a third time.
Thank you! Carolyn

Jump to this post

Oh Carolyn, I feel for you! I never had the elation of a negative culture, but I too will not do the antibiotics again, I was WAY too miserable.

If I was in your situation, I would dig into the current research on when to treat, and additional alternative treatments to add to my airway clearance. Also, maybe to ask your ID doc if there are any clinical trials you would qualify for?

I will be waiting to hear what you and the doctor figure out.
Sue

REPLY
BlueSplashGirl/ Carolyn | @bluesplashgirl | Jan 5, 2023

Thanks Sue! When I feel like researching alternatives I will do so but for now I am so done with the entire thing. Still am careful and still do dry salt inhaler but I have never been plagued with phlegm…yet. Thanks for the encouragement. I will keep you posted.
Happy New Year!

REPLY
tconz | @tconz | Jan 9, 2023
In reply to @bluesplashgirl "Hi Sue, Once again my sputum had been negative for a few sputum test (and then..." + (show)
@bluesplashgirl

Hi Sue,
Once again my sputum had been negative for a few sputum test (and then positive and negative again) and now positive. What are your thoughts on these ups and downs? I see my infectious disease doc in Feb and decided I won’t go back on the big 3 again. Obviously it doesn’t work for me and after ototoxicity from Azithro I am done having the “cure” be worse than the disease. Is it common to have positive and negative sputum ad infinitum? Sorry for the frustration seeping out. I just can’t do it for a third time.
Thank you! Carolyn

Jump to this post

I just started on the first 2 meds (Azithromycin and Ethambutol) of the Big 3 and will begin Rifampin in 5 days. If you don't mind my asking: what negative side affects did you have and how long were you on it? I have been extremely anxious about starting this treatment and also question is anyone really going to permanantly eliminate this disease from our bodies? I can't live in a bubble in order to cure this and I read all the ups and downs people go through mentally. Trying to stay positive but it is very overwhelming.

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