1. < MAC & Bronchiectasis

How to stay safe from MAC infections after bronchiectasis

Posted by @ling @wangling, Nov 14, 2022

Hi all,
I was just diagnosed with bronchiectasis. I have been reading your posts, it seems to me that some people have bronchiectasis for years without getting MAC infections. I am wondering how. It seems MAC bacteria is living with us in our daily life. I would appreciate it so much if you could share your successful experience about it. Many thanks in advance!

Ling

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irenea8 | @irenea8 | Nov 15, 2022

I have had Bronchiectasis since around 2001. As far as i know i do not have MAC. But the sputum testing for it does not always reveal it. People seem to say a Bronchoscopy is how they found it. Things i do or have read about to prevent it are: Nebulizing with Saline, Taking baths instead of showers, Not digging in the dirt or gardening or at least wear a good mask if you do, boiling water for 10 minutes or using spring water or using a LifeStraw pitcher that filters it out, masking when you vacuum or clean dust etc. Of course keeping your immune system strong with vitamin D3 etc.

REPLY
2 replies
@ling | @wangling | Nov 15, 2022
In reply to @irenea8 "I have had Bronchiectasis since around 2001. As far as i know i do not have..." + (show)
@irenea8

I have had Bronchiectasis since around 2001. As far as i know i do not have MAC. But the sputum testing for it does not always reveal it. People seem to say a Bronchoscopy is how they found it. Things i do or have read about to prevent it are: Nebulizing with Saline, Taking baths instead of showers, Not digging in the dirt or gardening or at least wear a good mask if you do, boiling water for 10 minutes or using spring water or using a LifeStraw pitcher that filters it out, masking when you vacuum or clean dust etc. Of course keeping your immune system strong with vitamin D3 etc.

Jump to this post

Hi @irenea8,
Thank you so much! What a lovely and hopeful note from you. 21 years free from MAC sounds like a miracle to me.
I appreciate it so much for sharing your experience. I will try to follow what you have done for so long and see what happens. It is great to know that LifeStraw pitcher could filter this bacteria out. It is not easy to achieve what you have achieved, but doable.
Many thanks again.
Liing

REPLY
irenea8 | @irenea8 | Nov 15, 2022

I hope I am MAC free. Sputum tests are not that reliable for MAC which is all I have had. I do have chronic Pseudomonas A. which if you ask me is as bad or worse! But I keep doing all I can to deal with it and to prevent MAC. You are fortunate to get all this information early on. I did not do anything much about my Bronchiectasis for many years other than cough up the mucus once a day with self learned breathing techniques. I only started with the nebulizing etc. etc. a few years ago. Do all you can to keep your airways clear. As my pulmonologist said "your airway secretions do not work normally with Bronchiectasis so you have to do other things to stay ahead of the mucus. And even then your clearance will not be as good as normal secretions". We really have to live differently than other people and avoid getting the flu or exacerbations to prevent further airway damage.

REPLY
1 reply
@ling | @wangling | Nov 15, 2022
In reply to @irenea8 "I have had Bronchiectasis since around 2001. As far as i know i do not have..." + (show)
@irenea8

I have had Bronchiectasis since around 2001. As far as i know i do not have MAC. But the sputum testing for it does not always reveal it. People seem to say a Bronchoscopy is how they found it. Things i do or have read about to prevent it are: Nebulizing with Saline, Taking baths instead of showers, Not digging in the dirt or gardening or at least wear a good mask if you do, boiling water for 10 minutes or using spring water or using a LifeStraw pitcher that filters it out, masking when you vacuum or clean dust etc. Of course keeping your immune system strong with vitamin D3 etc.

Jump to this post

Hi again,
Do you have a Nebulizer to recommend?

Many thanks!
Ling

REPLY
1 reply
irenea8 | @irenea8 | Nov 15, 2022
In reply to @wangling "Hi again, Do you have a Nebulizer to recommend? Many thanks! Ling" + (show)
@wangling

Hi again,
Do you have a Nebulizer to recommend?

Many thanks!
Ling

Jump to this post

I use the Pari Vios or the Pari Proneb Max. Those are the compressors. The reusable nebulizer cups are called Sprint also by Pari. And they come with tubing to connect the two. There are other systems that i am sure are good but that is what i use. Usually your pulmonologist will recommend which system and percentage of hypertonic Saline at 3% or 7% or other things like Albuterol depending on your situation. I found 7% saline to be much more effective. At first i did it once a day and then my pulmo told me twice a day. I also use the Aerobika twice a day. But then i have more mucus to clear due to the chronic Pseudomonas infection. If your pulmo is not an expert in Bronchiectasis then you might look for one if possible.

REPLY
2 replies
@ling | @wangling | Nov 15, 2022
In reply to @irenea8 "I hope I am MAC free. Sputum tests are not that reliable for MAC which is..." + (show)
@irenea8

I hope I am MAC free. Sputum tests are not that reliable for MAC which is all I have had. I do have chronic Pseudomonas A. which if you ask me is as bad or worse! But I keep doing all I can to deal with it and to prevent MAC. You are fortunate to get all this information early on. I did not do anything much about my Bronchiectasis for many years other than cough up the mucus once a day with self learned breathing techniques. I only started with the nebulizing etc. etc. a few years ago. Do all you can to keep your airways clear. As my pulmonologist said "your airway secretions do not work normally with Bronchiectasis so you have to do other things to stay ahead of the mucus. And even then your clearance will not be as good as normal secretions". We really have to live differently than other people and avoid getting the flu or exacerbations to prevent further airway damage.

Jump to this post

I  do feel lucky to find this group, especially this group has people like you who are here to help, share your experiences and offer advice. I appreciate it so much.
Living differently seems for sure, for instance, traveling would be problematic with this condition, because taking a bath would be a problem in a lot of places.
And dining out inside restaurants would be a problem too,especially in the flu season.
I am still digesting all this ......
Hope you continue to stay safe from MAC. 
Best luck to you and many thanks!
Ling

REPLY
@ling | @wangling | Nov 15, 2022
In reply to @irenea8 "I use the Pari Vios or the Pari Proneb Max. Those are the compressors. The reusable..." + (show)
@irenea8

I use the Pari Vios or the Pari Proneb Max. Those are the compressors. The reusable nebulizer cups are called Sprint also by Pari. And they come with tubing to connect the two. There are other systems that i am sure are good but that is what i use. Usually your pulmonologist will recommend which system and percentage of hypertonic Saline at 3% or 7% or other things like Albuterol depending on your situation. I found 7% saline to be much more effective. At first i did it once a day and then my pulmo told me twice a day. I also use the Aerobika twice a day. But then i have more mucus to clear due to the chronic Pseudomonas infection. If your pulmo is not an expert in Bronchiectasis then you might look for one if possible.

Jump to this post

Thanks a million for the info. You have a good point to find a pulmonologist expert in this area. I am not able to yet. I hopeI could find one.

Ling

REPLY
1 reply
sweethighland | @sweethighland | Nov 15, 2022
In reply to @wangling "Thanks a million for the info. You have a good point to find a pulmonologist expert..." + (show)
@wangling

Thanks a million for the info. You have a good point to find a pulmonologist expert in this area. I am not able to yet. I hopeI could find one.

Ling

Jump to this post

https://ntminfo.org/united-states-of-america/
Here Ling

REPLY
1 reply
sweethighland | @sweethighland | Nov 15, 2022
In reply to @irenea8 "I use the Pari Vios or the Pari Proneb Max. Those are the compressors. The reusable..." + (show)
@irenea8

I use the Pari Vios or the Pari Proneb Max. Those are the compressors. The reusable nebulizer cups are called Sprint also by Pari. And they come with tubing to connect the two. There are other systems that i am sure are good but that is what i use. Usually your pulmonologist will recommend which system and percentage of hypertonic Saline at 3% or 7% or other things like Albuterol depending on your situation. I found 7% saline to be much more effective. At first i did it once a day and then my pulmo told me twice a day. I also use the Aerobika twice a day. But then i have more mucus to clear due to the chronic Pseudomonas infection. If your pulmo is not an expert in Bronchiectasis then you might look for one if possible.

Jump to this post

Irine, for how many minutes do you nebulize? I'm glad you are MAC free without antibiotics.

REPLY
1 reply
@ling | @wangling | Nov 15, 2022
In reply to @sweethighland "https://ntminfo.org/united-states-of-america/ Here Ling" + (show)

What a resourceful group with wonderful people.
This is great.
Many thanks, sweethighland!

Ling

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