I am Nancy and I was recently diagnosed with MAC

Posted by nancysh @nancysh, Aug 10 8:41am

I wondered if anyone knows of a treatment other than the three antibiotic regimen. I also wonder what is the life expectancy of a person with this. With or without antibiotic treatment.

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Ethambutol + Azithromycin

Sputum culture susceptibilities need to done first to determine which antibiotic will work on MAC.

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I have been told of which three they are. Had a culture done from bronchoscope.

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@nancysh

I have been told of which three they are. Had a culture done from bronchoscope.

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Hello Nancy, and welcome to our support group. Can you tell us what led to the bronchoscope?

As for whether there are other treatments, the answer is a qualified "Yes" Depending upon the severity of your infection - if there are cavities or large nodules the infection is more advanced and antibiotics are usually required.
However, if the infection is less advanced, some people are able to keep it under control, or even decrease it, doing daily airway clearance and nebulizing 7% saline solution. The saline helps thin and loosen the mucus that harbors the infection and airway clearance helps you cough it out. 7% saline has the added advantage of creating an environment where MAC cannot grow.
If you are new to our site you might want to start by reading through these two discussions, which contain a variety of links and a lot of great information:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/?pg=12#chv4-comment-stream-header
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
Have you also been diagnosed with Bronchiectasis or COPD?

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@sueinmn

Hello Nancy, and welcome to our support group. Can you tell us what led to the bronchoscope?

As for whether there are other treatments, the answer is a qualified "Yes" Depending upon the severity of your infection - if there are cavities or large nodules the infection is more advanced and antibiotics are usually required.
However, if the infection is less advanced, some people are able to keep it under control, or even decrease it, doing daily airway clearance and nebulizing 7% saline solution. The saline helps thin and loosen the mucus that harbors the infection and airway clearance helps you cough it out. 7% saline has the added advantage of creating an environment where MAC cannot grow.
If you are new to our site you might want to start by reading through these two discussions, which contain a variety of links and a lot of great information:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/?pg=12#chv4-comment-stream-header
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
Have you also been diagnosed with Bronchiectasis or COPD?

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Thank you very much. I will look at all of this info

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Hi, I am Jane and recently beat MAC. I am now off the antibiotics and nebulizers after over 7 years. I am 77 years old and just wanted to give you hope that it can be beat and it isn't a life sentence. Some have it worse then others, but it can be beat if you do the nebulizing and take the antibiotics. Good luck to you and stay positive.

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@lauraadam2425

Hi, I am Jane and recently beat MAC. I am now off the antibiotics and nebulizers after over 7 years. I am 77 years old and just wanted to give you hope that it can be beat and it isn't a life sentence. Some have it worse then others, but it can be beat if you do the nebulizing and take the antibiotics. Good luck to you and stay positive.

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Thank you so much for the encouragement, Laura.

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There is inhaled Arikayce and lung clearance techniques but those are usually added to the 3 antibiotics. I had a 10 cm cavity form within a month waiting to start the 3 antibiotics. By the time damage starts it's hard to reverse. The treatment with antibiotics etc is less harmful than what this disease can be capable of

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Thank you, Suzy. I will start the antibiotics very soon.

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@lauraadam2425

Hi, I am Jane and recently beat MAC. I am now off the antibiotics and nebulizers after over 7 years. I am 77 years old and just wanted to give you hope that it can be beat and it isn't a life sentence. Some have it worse then others, but it can be beat if you do the nebulizing and take the antibiotics. Good luck to you and stay positive.

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Hi Jane, your message warmed my heart. May I know what did you nebulize and what are your airway clearance techniques? So happy that you beat MAC.

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@sweethighland

Hi Jane, your message warmed my heart. May I know what did you nebulize and what are your airway clearance techniques? So happy that you beat MAC.

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I used a nebulizer 3 times a day with sodium Chloride 7% nebulizer solution and was on Azithromycin 500mg, Rifampin 500mg and Ethamutol 300mg all on mon-wed-& fri. I had to get off ethambutol because of eye problems but continued the others until I got the ok to get off. I also had regular sputim tests. It was a long process but worth it in the end. I know I am luckier than others as I never got any fatigue but did loose 100 lbs.
Good luck to you and I hope you make it as well!

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