@darlindawn The prevailing wisdom 6-7 years ago when I was diagnosed was that you can't cure MAC/(MAI is one type).
But since then we have learned about using 7% saline to help keep the bacteria from multiplying in our lungs, the importance of continued daily airway clearance has been demonstrated, inhaled Arikace has come into common use, the link between GERD & MAC is better understood, and new treatments are on the horizon.
So now, with reasonable precautions, many of us are able to stay healthy for years without reinfection. There are 2 caveats - we still have damaged lungs, both from the underlying Bronchiectasis and all the remnants of infections, so we can be susceptible to reinfection by MAC or other bugs. And due to our lung damage, continued daily airway clearance is needed to keep the mucus out - it is the warm, moist breeding ground for infectious agents.
How long have you had MAC? Are you taking the 3 drug regimen for it?
Sue
@darlindawn The prevailing wisdom 6-7 years ago when I was diagnosed was that you can't cure MAC/(MAI is one type).
But since then we have learned about using 7% saline to help keep the bacteria from multiplying in our lungs, the importance of continued daily airway clearance has been demonstrated, inhaled Arikace has come into common use, the link between GERD & MAC is better understood, and new treatments are on the horizon.
So now, with reasonable precautions, many of us are able to stay healthy for years without reinfection. There are 2 caveats - we still have damaged lungs, both from the underlying Bronchiectasis and all the remnants of infections, so we can be susceptible to reinfection by MAC or other bugs. And due to our lung damage, continued daily airway clearance is needed to keep the mucus out - it is the warm, moist breeding ground for infectious agents.
How long have you had MAC? Are you taking the 3 drug regimen for it?
Sue
I was diagnosed 3 weeks ago but it looks like I have had it since late 2020. I hope that airway clearance is something that they will teach me at The U because I am so new to this. I have been the type of person that is horribly embarrassed to cough my entire life. I have taught myself subconsciously to do everything not to. Thank you for your response. I was reading something in my blood work and thought that it meant that it was genetic and I had a complete meltdown. Having everything blamed on having Elhers Danlos is devastating. I have deteriorated in the last to years so badly I need some hope. I haven’t started treatment yet. I start go to my first appointment in July
I was diagnosed 3 weeks ago but it looks like I have had it since late 2020. I hope that airway clearance is something that they will teach me at The U because I am so new to this. I have been the type of person that is horribly embarrassed to cough my entire life. I have taught myself subconsciously to do everything not to. Thank you for your response. I was reading something in my blood work and thought that it meant that it was genetic and I had a complete meltdown. Having everything blamed on having Elhers Danlos is devastating. I have deteriorated in the last to years so badly I need some hope. I haven’t started treatment yet. I start go to my first appointment in July
Here is your hope. You can be cured from MAC. I tried the Big 3 for a very long time, but the MAC did not go away. I finally was in a clinical trial of Arikayce back in 2020 and maybe even before that. I’d have to go check. The Arikayce cured me of MAC. So yes, you can be cured!! Wishing you the best of luck. (irene5))
@darlindawn The prevailing wisdom 6-7 years ago when I was diagnosed was that you can't cure MAC/(MAI is one type).
But since then we have learned about using 7% saline to help keep the bacteria from multiplying in our lungs, the importance of continued daily airway clearance has been demonstrated, inhaled Arikace has come into common use, the link between GERD & MAC is better understood, and new treatments are on the horizon.
So now, with reasonable precautions, many of us are able to stay healthy for years without reinfection. There are 2 caveats - we still have damaged lungs, both from the underlying Bronchiectasis and all the remnants of infections, so we can be susceptible to reinfection by MAC or other bugs. And due to our lung damage, continued daily airway clearance is needed to keep the mucus out - it is the warm, moist breeding ground for infectious agents.
How long have you had MAC? Are you taking the 3 drug regimen for it?
Sue
There are multiple practical things to do to reduce other infections and protect your lungs.
I was told by my I D dr. From the beginning that it takes a minimum of 10 minutes of boiling water to kill mycobacteria. So I only drink my own water and I boil it about 12 minutes. She also told me no showers because of the aeration and breathing the bacteria from the water. She also told me no swimming in indoor pools or getting in hot tubs. She told me I might will be a silent aspirator And not to lie down for a minimum of two hours after eating. She also told me to sleep elevated cough cough cough. Keep the airways clean. One pulmonologist told me use your lungs or lose your lungs they clean themselves during cardiovascular activity. There are so many practical things to do . Stay away from obvious smells, exhaust. Mucinex daily along with NAC.
On & on...
I was diagnosed 3 weeks ago but it looks like I have had it since late 2020. I hope that airway clearance is something that they will teach me at The U because I am so new to this. I have been the type of person that is horribly embarrassed to cough my entire life. I have taught myself subconsciously to do everything not to. Thank you for your response. I was reading something in my blood work and thought that it meant that it was genetic and I had a complete meltdown. Having everything blamed on having Elhers Danlos is devastating. I have deteriorated in the last to years so badly I need some hope. I haven’t started treatment yet. I start go to my first appointment in July
@lostinkc I think maybe we all think that too at the beginning . How did I get this? How long has it been in there? Back in 2015/16 I was quite anxious about that diagnosis and racked my little brain trying to figure out the when and the where. You could literally drive yourself nuts that way because there are a kazillion ways you can contract MAC/MAI. The important thing now is you know and can read about it being everywhere and kind of deduce the how and the where based on your lifestyle and then deal with it appropriately for yourself. ( ID doctor and pulmonologist and medication) And you have this site to come to for help. And that’s the real good news!! The people you meet and the information gleaned is just incredible. (irene5)
Here is your hope. You can be cured from MAC. I tried the Big 3 for a very long time, but the MAC did not go away. I finally was in a clinical trial of Arikayce back in 2020 and maybe even before that. I’d have to go check. The Arikayce cured me of MAC. So yes, you can be cured!! Wishing you the best of luck. (irene5))
Oh yes I have bronchiectasis as well. That you can’t cure - just treat. Tis the condition that keeps on giving which is why it is important to nebulize. I never realized how important it is until I went from MAC to aspergillosis to RSV and then pseudomonas. So many nasty invaders like to hide out down there so it is very important to get that mucous breeding ground environment up and out of there as much as possible! (irene5)
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You suppress them but do not eradicate
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1 Reaction@darlindawn The prevailing wisdom 6-7 years ago when I was diagnosed was that you can't cure MAC/(MAI is one type).
But since then we have learned about using 7% saline to help keep the bacteria from multiplying in our lungs, the importance of continued daily airway clearance has been demonstrated, inhaled Arikace has come into common use, the link between GERD & MAC is better understood, and new treatments are on the horizon.
So now, with reasonable precautions, many of us are able to stay healthy for years without reinfection. There are 2 caveats - we still have damaged lungs, both from the underlying Bronchiectasis and all the remnants of infections, so we can be susceptible to reinfection by MAC or other bugs. And due to our lung damage, continued daily airway clearance is needed to keep the mucus out - it is the warm, moist breeding ground for infectious agents.
How long have you had MAC? Are you taking the 3 drug regimen for it?
Sue
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2 ReactionsI was diagnosed 3 weeks ago but it looks like I have had it since late 2020. I hope that airway clearance is something that they will teach me at The U because I am so new to this. I have been the type of person that is horribly embarrassed to cough my entire life. I have taught myself subconsciously to do everything not to. Thank you for your response. I was reading something in my blood work and thought that it meant that it was genetic and I had a complete meltdown. Having everything blamed on having Elhers Danlos is devastating. I have deteriorated in the last to years so badly I need some hope. I haven’t started treatment yet. I start go to my first appointment in July
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1 ReactionHere is your hope. You can be cured from MAC. I tried the Big 3 for a very long time, but the MAC did not go away. I finally was in a clinical trial of Arikayce back in 2020 and maybe even before that. I’d have to go check. The Arikayce cured me of MAC. So yes, you can be cured!! Wishing you the best of luck. (irene5))
There are multiple practical things to do to reduce other infections and protect your lungs.
I was told by my I D dr. From the beginning that it takes a minimum of 10 minutes of boiling water to kill mycobacteria. So I only drink my own water and I boil it about 12 minutes. She also told me no showers because of the aeration and breathing the bacteria from the water. She also told me no swimming in indoor pools or getting in hot tubs. She told me I might will be a silent aspirator And not to lie down for a minimum of two hours after eating. She also told me to sleep elevated cough cough cough. Keep the airways clean. One pulmonologist told me use your lungs or lose your lungs they clean themselves during cardiovascular activity. There are so many practical things to do . Stay away from obvious smells, exhaust. Mucinex daily along with NAC.
On & on...
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4 ReactionsHow do you know when you got it? I would like to know how long this has been in my lungs.
@lostinkc I think maybe we all think that too at the beginning . How did I get this? How long has it been in there? Back in 2015/16 I was quite anxious about that diagnosis and racked my little brain trying to figure out the when and the where. You could literally drive yourself nuts that way because there are a kazillion ways you can contract MAC/MAI. The important thing now is you know and can read about it being everywhere and kind of deduce the how and the where based on your lifestyle and then deal with it appropriately for yourself. ( ID doctor and pulmonologist and medication) And you have this site to come to for help. And that’s the real good news!! The people you meet and the information gleaned is just incredible. (irene5)
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1 ReactionThat is fantastic!
Did you or do you have bronchiectasis?
This seems to cause MAC to return
Where were you treated?
Are your lungs highly damaged?
I know the damage does not go away.
Oh yes I have bronchiectasis as well. That you can’t cure - just treat. Tis the condition that keeps on giving which is why it is important to nebulize. I never realized how important it is until I went from MAC to aspergillosis to RSV and then pseudomonas. So many nasty invaders like to hide out down there so it is very important to get that mucous breeding ground environment up and out of there as much as possible! (irene5)