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

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.

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

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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!

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

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

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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

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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

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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.

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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:
https://www.youtube.com/watch?v=6JgZCii7JuA

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

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:
https://www.youtube.com/watch?v=6JgZCii7JuA

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