1. < Infectious Diseases

Has anyone ever recovered from mycobacterium avium intracelluar comple

Posted by darlindawn @darlindawn, May 23 11:15pm

To tired

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lilianna | @lilianna | May 24 7:18am

You suppress them but do not eradicate

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Mentor
Sue, Volunteer Mentor | @sueinmn | May 24 4:46pm

@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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1 reply
darlindawn | @darlindawn | Jun 6 9:39pm
In reply to @sueinmn "@darlindawn The prevailing wisdom 6-7 years ago when I was diagnosed was that you can't cure..." + (show)
@sueinmn

@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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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

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1 reply
irene5 Irene Estes | @irene5 | Jun 7 5:29pm
In reply to @darlindawn "I was diagnosed 3 weeks ago but it looks like I have had it since late..." + (show)
@darlindawn

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

Jump to this post

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))

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