Connect
← Return to Has anyone ever recovered from mycobacterium avium intracelluar comple
Discussion
Has anyone ever recovered from mycobacterium avium intracelluar comple
Infectious Diseases | Last Active: Jun 24 4:07pm | Replies (11)Comment receiving replies
@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
Replies to "@darlindawn The prevailing wisdom 6-7 years ago when I was diagnosed was that you can't cure..."
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...
Connect
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