1. < MAC & Bronchiectasis

Treatment for MAC

Posted by mb53 @mb53, Jan 21 2:38pm

I am on the verge of starting the 3 antibiotic treatment for MAC. I am interested to hear other people’s experience with this treatment. I use a 7% nebulizer treatment almost daily and walk and hike. Seems so weird to do this treatment when I feel ok, just coughing at times. Apparently if you wait until it gets worse it’s harder to treat?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 3 3:56pm
In reply to @blm1007blm1007 "Sue, the doctors statement to you.... "Stay away from peat moss".....,reminded me of another of my..." + (show)
@blm1007blm1007

Sue, the doctors statement to you.... "Stay away from peat moss".....,reminded me of another of my thoughts to myself, regading peat moss and the cleaning of leaves.
I posted earleir what I said to myself after cleaning out a bird house. I said: 'That was bad, you just breathed in dust.'"
Within the last several years before the doctor realized and apparently said to himself due to his ordering a C Scan: "Yes this woman does have a problem as she has been coming in and telling me for the last few years" (C Scan of 8/22 that found BE.), I said the same thing to myself after breathing in 'dust' while working with peat moss.
However, I also cleaned up leaves with a blower behind the Crape Myrtle tress in the early Spring of 2021 and thought afterwards: "You didn''t think to wear a Mask."
So there I was again in the landscape with dry decayed matter that probably had some really bad stuff in it. No mask. Sad that I knew it wasn't a good thing but didn't think of Masks any time before our concern with Covid and how a Mask would be best in doing all the garden tasks etc.....and of course at that time didn't know how dealing with certain garden/yard tasks are as serious to our health and well being nor did I know of BE......but.....in my heart of hearts I knew what happened, the breathing in of landscape material/particles and dust wasn't a good thing.
Masks and caution are so important....sometimes we take too much for granted when feeling good, strong and healthy. Now I wear a mask most of the time I am out in public to avoid all other types of nasty health problems and as well wear a mask when needed when working in the landscape. Another learning....learned too late...BE etc. etc.

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I laughed about the masks...my brother nagged me for years to wear one working outdoors (he has severe asthma and other lung issues) and I ignored him...to his credit he didn't say "Told you so!' after I was diagnosed (this was before Covid) but now I do wear the N95 mask for a lot of tasks - including sanding wood - to spare my lungs.
Thursday I opened one of my craft totes and found a supply of masks - when I fabric shop, dig in donation piles, even clean sewing machines for people - I wear them to keep dust out - not for fear of germs but to avoid irritation to my lungs.
We sometimes get, as my Gramma used to say "Too soon old and too late smart" - but I'm learning.
Sue

REPLY
andree8880 | @andree8880 | Feb 4 11:28am
In reply to @blixtentoo "Did you have the inhaled Arikayce or the IV. I am supposed to be starting the..." + (show)
@blixtentoo

Did you have the inhaled Arikayce or the IV. I am supposed to be starting the inhaled soon and worried. But your tips are helpful.

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I have taken the big 3 for Mac but have become very allergic to Azythromyacin after 18 months. My ID doctor has no solution for me. I mentioned Arikayce and he said that it’s a very hard drug to take and would make me sick.
Any comment would be appreciated.
Thank you

REPLY
2 replies
mb53 | @mb53 | Feb 4 11:57am
In reply to @blm1007blm1007 "Sue, the doctors statement to you.... "Stay away from peat moss".....,reminded me of another of my..." + (show)
@blm1007blm1007

Sue, the doctors statement to you.... "Stay away from peat moss".....,reminded me of another of my thoughts to myself, regading peat moss and the cleaning of leaves.
I posted earleir what I said to myself after cleaning out a bird house. I said: 'That was bad, you just breathed in dust.'"
Within the last several years before the doctor realized and apparently said to himself due to his ordering a C Scan: "Yes this woman does have a problem as she has been coming in and telling me for the last few years" (C Scan of 8/22 that found BE.), I said the same thing to myself after breathing in 'dust' while working with peat moss.
However, I also cleaned up leaves with a blower behind the Crape Myrtle tress in the early Spring of 2021 and thought afterwards: "You didn''t think to wear a Mask."
So there I was again in the landscape with dry decayed matter that probably had some really bad stuff in it. No mask. Sad that I knew it wasn't a good thing but didn't think of Masks any time before our concern with Covid and how a Mask would be best in doing all the garden tasks etc.....and of course at that time didn't know how dealing with certain garden/yard tasks are as serious to our health and well being nor did I know of BE......but.....in my heart of hearts I knew what happened, the breathing in of landscape material/particles and dust wasn't a good thing.
Masks and caution are so important....sometimes we take too much for granted when feeling good, strong and healthy. Now I wear a mask most of the time I am out in public to avoid all other types of nasty health problems and as well wear a mask when needed when working in the landscape. Another learning....learned too late...BE etc. etc.

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Ditto here on the gardening. A pretty much lifelong interest and no mask wearing until now. I also do ceramics and am very careful not to be around any dry clay as there is silica in it and maybe other stuff. Fortunately the throwing and trimming are done with the clay wet. Better late than never on the mask wearing

REPLY
suzyqueue | @suzyqueue | Feb 5 6:16am
In reply to @andree8880 "I have taken the big 3 for Mac but have become very allergic to Azythromyacin after..." + (show)
@andree8880

I have taken the big 3 for Mac but have become very allergic to Azythromyacin after 18 months. My ID doctor has no solution for me. I mentioned Arikayce and he said that it’s a very hard drug to take and would make me sick.
Any comment would be appreciated.
Thank you

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Inhaled Arikayce was a game changer for me. It's what has kept me stable and shrunk a 10 cm cavity to 4. I'd either demand your doctor hook you up with Arikayce or get a different Infectious Disease doctor.

REPLY
irene5 Irene Estes | @irene5 | Feb 5 8:38am
In reply to @andree8880 "I have taken the big 3 for Mac but have become very allergic to Azythromyacin after..." + (show)
@andree8880

I have taken the big 3 for Mac but have become very allergic to Azythromyacin after 18 months. My ID doctor has no solution for me. I mentioned Arikayce and he said that it’s a very hard drug to take and would make me sick.
Any comment would be appreciated.
Thank you

Jump to this post

Arikayce was way easier for me than the Big 3. It never made me sick and cured my MAC. Another option for you in lieu of Azithromycin would be Clarithromycin. I am surprised that wasn’t mentioned to you. Good luck! Irene5

REPLY
1 reply
detsdum | @detsdum | Feb 5 11:06am
In reply to @irene5 "Arikayce was way easier for me than the Big 3. It never made me sick and..." + (show)
@irene5

Arikayce was way easier for me than the Big 3. It never made me sick and cured my MAC. Another option for you in lieu of Azithromycin would be Clarithromycin. I am surprised that wasn’t mentioned to you. Good luck! Irene5

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Was Arikayce taken as a stand alone therapy or in addition to other antibiotics? Do you have to have failed other drug therapies for 6 months before you qualify to receive Arikayce?

REPLY
1 reply
irene5 Irene Estes | @irene5 | Feb 5 12:06pm

For me it was supposed to be used in addition to the other three, but I only could tolerate the Arikayce. That whole thing didn’t make sense to me because it is used because you can’t tolerate the others or they failed to eradicate the MAC. Arikayce alone eradicated my MAC. Irene5

REPLY
irene5 Irene Estes | @irene5 | Feb 5 12:07pm
In reply to @detsdum "Was Arikayce taken as a stand alone therapy or in addition to other antibiotics? Do you..." + (show)
@detsdum

Was Arikayce taken as a stand alone therapy or in addition to other antibiotics? Do you have to have failed other drug therapies for 6 months before you qualify to receive Arikayce?

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And yes it is supposed to be six months of trying the others. My “trying” was like three years!!

REPLY
1 reply
detsdum | @detsdum | Feb 5 12:21pm
In reply to @irene5 "And yes it is supposed to be six months of trying the others. My “trying” was..." + (show)
@irene5

And yes it is supposed to be six months of trying the others. My “trying” was like three years!!

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Thanks, Congrats on your success. Lets hope it holds forever.

REPLY
1 reply
irene5 Irene Estes | @irene5 | Feb 5 5:54pm
In reply to @detsdum "Thanks, Congrats on your success. Lets hope it holds forever." + (show)
@detsdum

Thanks, Congrats on your success. Lets hope it holds forever.

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Thank you! Every day is a gift that should never be taken for granted! I am grateful and blessed.

REPLY
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