1. < MAC & Bronchiectasis

New to MAC and considering treatments options: What did you do?

Posted by ajwelsh @ajwelsh, Aug 11, 2022

Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

med08 | @med08 | Aug 16, 2022
In reply to @cate123456 "RE: sore throat w saline nebs. Two things that I found that helps are switching from..." + (show)
@cate123456

RE: sore throat w saline nebs.
Two things that I found that helps are switching from a mouth piece to a mask and breathing through nose/sinuses instead of mouth.
And I use some yogurt or thick cream to coat my throat before and while using the saline. Both these things made it so I can now use 7% or 3.5% regularly.

Jump to this post

Thank you so much. I did switch to mask and still was sore. I am going to try the yogurt. What a great idea. 💕

REPLY
2 replies
cate123456 | @cate123456 | Aug 16, 2022
In reply to @med08 "Thank you so much. I did switch to mask and still was sore. I am going..." + (show)
@med08

Thank you so much. I did switch to mask and still was sore. I am going to try the yogurt. What a great idea. 💕

Jump to this post

When you switched to mask, do you breath through sinuses instead of mouth?
I put a little cup of maybe three tablespoons of yogurt next to me. Before nebbing, I coat throat and then take a few breaks during nebbing to recoat it.
Good luck!

REPLY
1 reply
med08 | @med08 | Aug 16, 2022
In reply to @cate123456 "When you switched to mask, do you breath through sinuses instead of mouth? I put a..." + (show)
@cate123456

When you switched to mask, do you breath through sinuses instead of mouth?
I put a little cup of maybe three tablespoons of yogurt next to me. Before nebbing, I coat throat and then take a few breaks during nebbing to recoat it.
Good luck!

Jump to this post

I did, but I probably breathed a few times through the mouth. After second day. I couldn’t continue. I have read a book called Breath by James Nestor that is all about breathing through your nose only so I always try to do that and to never mouth breath. I am definitely going to take your advice and really concentrate on nasal breathing even more so with the yogurt. ❤️

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 16, 2022
In reply to @med08 "Thank you so much. I did switch to mask and still was sore. I am going..." + (show)
@med08

Thank you so much. I did switch to mask and still was sore. I am going to try the yogurt. What a great idea. 💕

Jump to this post

You can also try Throat Coat tea by Traditional Medicinals.
I hate the taste, but it protects my throat.
Also, if you voice tends to fade or go raspy when you talk a lot, a cup of Throat Coat before the outing is helpful.
Sue

REPLY
2 replies
poodledoc | @poodledoc | Aug 16, 2022
In reply to @sueinmn "I would say 3 weeks? @poodledoc & others, how long before you noticed the saline neb..." + (show)
@sueinmn

I would say 3 weeks? @poodledoc & others, how long before you noticed the saline neb helping?

Jump to this post

Sue, I started nebbing the 7% saline in Feb 2020 and noticed an immediate thinning of sputum making it easier to get up with my airway clearance. Can't really say it made me feel any better until I stopped taking antibiotics in Oct 2020. Also for anybody interested PulmoSal 7% (pH+) is now available at my pharmacy (Sams Club). I have been using it for a few days and can tell that my airways are less "irritated". For more info check out this post https://connect.mayoclinic.org/discussion/ph-balanced-7-saline/ Bill

REPLY
1 reply
med08 | @med08 | Aug 16, 2022
In reply to @sueinmn "You can also try Throat Coat tea by Traditional Medicinals. I hate the taste, but it..." + (show)
@sueinmn

You can also try Throat Coat tea by Traditional Medicinals.
I hate the taste, but it protects my throat.
Also, if you voice tends to fade or go raspy when you talk a lot, a cup of Throat Coat before the outing is helpful.
Sue

Jump to this post

Thank you. I will try that.

REPLY
med08 | @med08 | Aug 16, 2022
In reply to @sueinmn "You can also try Throat Coat tea by Traditional Medicinals. I hate the taste, but it..." + (show)
@sueinmn

You can also try Throat Coat tea by Traditional Medicinals.
I hate the taste, but it protects my throat.
Also, if you voice tends to fade or go raspy when you talk a lot, a cup of Throat Coat before the outing is helpful.
Sue

Jump to this post

Thank you I will get today

REPLY
crepass | @crepass | Aug 16, 2022
In reply to @lweirdo1 "I'm just trying to figure my own program out as well. I'm doing anything and Everything..." + (show)
@lweirdo1

I'm just trying to figure my own program out as well. I'm doing anything and Everything I can to try and fight this as it's really made my life miserable. I'm doing the three antibiotics three times weekly, I'm using Albuterol in a nebulizer, an Acapella valve and just started Arikares. I'm also sitting on a box of 7% saline but I'm just trying to figure out where I put this in my program as I'm a bit overloaded & still need to work and get things done. Any ideas? Am I on the right track here? Your thoughts would be really welcome.

Jump to this post

Hey, I am new this year to antibx and 7%saline nebs. It has been a period of adjustment since I still work. I only have a very good infectious disease doctor (who is open to suggestions I get on this group chat) and will get a pulmonologist when I find time. (hopefully next year). I had to quit the rifampin due to side effects. but am managing the other 2(3x a week). She suggested arikayce lately, but I said no until I get results from a november CT scan. (I do not have lung cavitations).-(Does anyone know if the new protocols add arikayce for nodular MAC?) I got use to the nebs after a week, but I must admit, I'm down to once a day because I figure I'm coughing up some sputum daily, using aerobika, and postural drainage (Yoga bridge) and I haven't been sick this year except for a virus that did not turn into an exacerbation. I may have to extend this treatment period ....but it fits my schedule. Good luck with your journey. Questions are always good. Cindy

REPLY
1 reply
crepass | @crepass | Aug 16, 2022
In reply to @sueinmn "Hello - There have been a number of suggestions for tinctures, herbs, supplements, etc by members..." + (show)
@sueinmn

Hello -
There have been a number of suggestions for tinctures, herbs, supplements, etc by members on Connect who are infected with MAC or affected with Bronchiectasis.

I wanted to see if I could help with your questions, so I took a minute to read through your posts. It seems that, like with many of us, it took a while to get a diagnosis and now you are waiting to see what drugs will be prescribed. And reading - and you are scared by what you read. ALL of this is familiar to me, and nearly everyone else who has/had MAC! It is a rare disease few people have heard of (until they get it) - and even most doctors and many pulmonologists are not well-versed in it.

So, let's back up a step and talk about the goals of Mayo Connect. The aims are to connect community members who have similar diagnosis to one another for support. Part of that support is to talk about what are the best courses of treatment, and what has helped us along the way. In addition, we encourage each person to her own best advocate & and informed consumer of both medical services and auxiliary treatments. Another piece is to make sure that any treatment recommended is safe, as well as based on some sort of science or research.

Now on to MAC and when/how to treat. It is a very slow-growing bacteria that can be found everywhere, so few of us know how we acquired it. It is quite difficult to eradicate once it takes hold, because it hides itself inside a tough "biofilm" shell. That is why it requires a rigorous long-term course of 3 (sometimes 4) antibiotics. Some people's bodies are able to get rid of it without treatment, others are never "cured" no matter what they take of for how long. In some lungs, it invades and causes nodules & cavities, in others it just hangs around with few symptoms. Ugh! How to know what to do?

National Jewish Health (NJH) and some other lung-focused research and treatment centers focus on this issue every day, and the recommendations are updated every couple years. Currently, it is 2 positive cultures, CT evidence of cavities or nodules, plus consultation with your docs. Treatment need not be automatic if the lungs do not show severe damage, one can WAIT and MONITOR. Watching this video from NJH is very helpful:


So, if we decide to wait and watch, what can we do?
Follow the doctors' recommendations for repeat sputum cultures, xrays & CT scans.
Stay as healthy as possible - healthy diet, exercise, rest, manage all other conditions, avoid sick people.
If you have asthma, control it to keep airways open.
Work to keep your airways clear, so the bacteria has less warm, dark places to hide. A demonstrated way to do this is via regular airway clearance. That means huff coughing, postural drainage or using an airway vibratory device. There are many examples here and on-line of this.
Next, thin the mucus. To do this directly, you nebulize saline solution. Standard saline is .9%, which will thin the mucus, but not slow the bacteria. 7% saline has been tested, and it's been demonstrated that most Mycobacteria hate it and can't grow in it. NJH supports the usefulness of both airway clearance and 7% saline.
Finally, there have been a few supplements or medications that demonstrably make mucus less sticky. Among these are glutathione and N-acetyl Cysteine.

There is little scientific evidence that other herbs or supplements are both effective for fighting MAC infections and safe for long-term use.

I hope this helps message, along with watching the NJH video, helps you make some decisions.
Sue

Jump to this post

Thanks Sue,
That was an amazing video. It even talks about the trial of "Brenzocatib". Such good news that they are working on a treatment for bronchiectasis. I learned a lot.
Cindy

REPLY
cavlover | @cavlover | Aug 16, 2022
In reply to @sueinmn "Hello - There have been a number of suggestions for tinctures, herbs, supplements, etc by members..." + (show)
@sueinmn

Hello -
There have been a number of suggestions for tinctures, herbs, supplements, etc by members on Connect who are infected with MAC or affected with Bronchiectasis.

I wanted to see if I could help with your questions, so I took a minute to read through your posts. It seems that, like with many of us, it took a while to get a diagnosis and now you are waiting to see what drugs will be prescribed. And reading - and you are scared by what you read. ALL of this is familiar to me, and nearly everyone else who has/had MAC! It is a rare disease few people have heard of (until they get it) - and even most doctors and many pulmonologists are not well-versed in it.

So, let's back up a step and talk about the goals of Mayo Connect. The aims are to connect community members who have similar diagnosis to one another for support. Part of that support is to talk about what are the best courses of treatment, and what has helped us along the way. In addition, we encourage each person to her own best advocate & and informed consumer of both medical services and auxiliary treatments. Another piece is to make sure that any treatment recommended is safe, as well as based on some sort of science or research.

Now on to MAC and when/how to treat. It is a very slow-growing bacteria that can be found everywhere, so few of us know how we acquired it. It is quite difficult to eradicate once it takes hold, because it hides itself inside a tough "biofilm" shell. That is why it requires a rigorous long-term course of 3 (sometimes 4) antibiotics. Some people's bodies are able to get rid of it without treatment, others are never "cured" no matter what they take of for how long. In some lungs, it invades and causes nodules & cavities, in others it just hangs around with few symptoms. Ugh! How to know what to do?

National Jewish Health (NJH) and some other lung-focused research and treatment centers focus on this issue every day, and the recommendations are updated every couple years. Currently, it is 2 positive cultures, CT evidence of cavities or nodules, plus consultation with your docs. Treatment need not be automatic if the lungs do not show severe damage, one can WAIT and MONITOR. Watching this video from NJH is very helpful:


So, if we decide to wait and watch, what can we do?
Follow the doctors' recommendations for repeat sputum cultures, xrays & CT scans.
Stay as healthy as possible - healthy diet, exercise, rest, manage all other conditions, avoid sick people.
If you have asthma, control it to keep airways open.
Work to keep your airways clear, so the bacteria has less warm, dark places to hide. A demonstrated way to do this is via regular airway clearance. That means huff coughing, postural drainage or using an airway vibratory device. There are many examples here and on-line of this.
Next, thin the mucus. To do this directly, you nebulize saline solution. Standard saline is .9%, which will thin the mucus, but not slow the bacteria. 7% saline has been tested, and it's been demonstrated that most Mycobacteria hate it and can't grow in it. NJH supports the usefulness of both airway clearance and 7% saline.
Finally, there have been a few supplements or medications that demonstrably make mucus less sticky. Among these are glutathione and N-acetyl Cysteine.

There is little scientific evidence that other herbs or supplements are both effective for fighting MAC infections and safe for long-term use.

I hope this helps message, along with watching the NJH video, helps you make some decisions.
Sue

Jump to this post

Hi Sue, Is there a way to share this video? There is so much new info (to me anyway). I need to watch it again and take notes. Would love to have a discussion on it.
Thank you.

REPLY
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