1. < MAC & Bronchiectasis

Is there any successful story?

Posted by helen1000 @helen1000, Jan 20 8:54am

My pulmonologist says MAC is rarely cured. But I was also told that less than 30% patients can be fully cured without any reinfection, relapse or recurrence. Is there any success story that someone can successfully manage MAC without recurrence or relapse by AWC over 5 years, 10 years or 20 years? And also without any other lung infection like other bacteria or fungus?

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helen1000 | @helen1000 | Jan 29 4:46am
In reply to @reneemc "The imipenum and Amikacin were through the PICC line, Dr said could only use for 8..." + (show)
@reneemc

The imipenum and Amikacin were through the PICC line, Dr said could only use for 8 weeks. The Linezolid made my platelets too low. The Omadacycline the insurance company wouldn’t keep paying for. That first treatment got rid of Abcessus. Still have cavities.

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I believe the reason for me to get MAC is that my parents always gave me antibiotics when I was a young child even when it was not necessary. I just need to avoid wheat because i am not intolerant to it. Antibiotics are so toxic. We need vegan food to detoxify our body and keep our gut health.

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1 reply
lauraadam2425 | @lauraadam2425 | Jan 30 7:32am

I was diagnosed with MAC about 5 years ago but they believe I might have had it up to 7 years before being diagnosed. I was on the big 3 for 1 1/2 years but then failed the field vision test 3 times and my eye dr took me off Ethambutol immediately. After being off Ethambutol for 3 months I could pass the test. Make sure you have your eyes tested regularly! I was then put on Arikayce for about a year but had to get off because my cough was chronic. After being off the med the cough was gone. I was tested 1 year ago and am MAC free - no more meds, but I do believe they worked. I am 78 years old so it shows no matter how old you are there is hope. I still have a chance it could come back but I am hopeful it won't. Good luck

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hbarbh | @hbarbh | Jan 30 3:37pm
In reply to @bayarea58 "Let me add something that may be obvious but I think worth noting: This group is..." + (show)
@bayarea58

Let me add something that may be obvious but I think worth noting: This group is likely somewhat of a biased patient population. We may be more symptomatic, more frequently dealing with infections and other challenges, more vigilant, more data and research oriented, more anxious and need of support, or just overall more curious than the average patient. I can easily believe that those who were one-and-done “cured” 5, 10 of more years ago, even if they were part of this group during their “treating” years, are no longer checking in, at least not with any regularity. So just because those “success stories” may not be posting here doesn’t mean they don’t exist. I am not saying they do exist — I have no idea — but I think this is another good reason to seek out a MAC specialist with significant experience treating MAC. In my opinion these specialists are likely the best source for knowing what’s happening on the ground, long term. I am not aware of any study tracking reinfection rates beyond a few years (which I do think is problematic given the high reinfection rates over time).

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Hi bayarea. You're right about people being treated successfully then not checking back in to the MAC groups. Happened to me. I was so happy to be done with 3 solid years of treatment that I was like "I'm outta here and never want to come back!" I think I started the Mac horror show in 2016. The big 3 didn't seem to work. I was jamming those monsters down my throat for two solid years and still.... mac mac mac. So Arikayce was added to the mix. Another year went by where I was taking the big 3 and arikayce with it. I probably didn't even need those 3 dumb meds. It was the arikayce that did the trick. Anyway by the time I endured 3 years of treatment --- and when I finally got 6 months of negative cultures back I was sick to death of the whole routine so I decided to never go back to a doctor again. I'm done I don't care to even know if there's mac in there. Doesn't seem like it to me. I live alone on a little homestead in the country and I work like a 35 year old man. (I'm 71) When I'm chopping wood or cutting and stacking a field of hay with hand tools I think to myself . "I'm cured." My mind says I'm cured and I believe it.

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3 replies
carolweinberg | @carolweinberg | Jan 31 9:46am
In reply to @hbarbh "Hi bayarea. You're right about people being treated successfully then not checking back in to the..." + (show)
@hbarbh

Hi bayarea. You're right about people being treated successfully then not checking back in to the MAC groups. Happened to me. I was so happy to be done with 3 solid years of treatment that I was like "I'm outta here and never want to come back!" I think I started the Mac horror show in 2016. The big 3 didn't seem to work. I was jamming those monsters down my throat for two solid years and still.... mac mac mac. So Arikayce was added to the mix. Another year went by where I was taking the big 3 and arikayce with it. I probably didn't even need those 3 dumb meds. It was the arikayce that did the trick. Anyway by the time I endured 3 years of treatment --- and when I finally got 6 months of negative cultures back I was sick to death of the whole routine so I decided to never go back to a doctor again. I'm done I don't care to even know if there's mac in there. Doesn't seem like it to me. I live alone on a little homestead in the country and I work like a 35 year old man. (I'm 71) When I'm chopping wood or cutting and stacking a field of hay with hand tools I think to myself . "I'm cured." My mind says I'm cured and I believe it.

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I’m with you!

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scoop | @scoop | Jan 31 10:21am
In reply to @hbarbh "Hi bayarea. You're right about people being treated successfully then not checking back in to the..." + (show)
@hbarbh

Hi bayarea. You're right about people being treated successfully then not checking back in to the MAC groups. Happened to me. I was so happy to be done with 3 solid years of treatment that I was like "I'm outta here and never want to come back!" I think I started the Mac horror show in 2016. The big 3 didn't seem to work. I was jamming those monsters down my throat for two solid years and still.... mac mac mac. So Arikayce was added to the mix. Another year went by where I was taking the big 3 and arikayce with it. I probably didn't even need those 3 dumb meds. It was the arikayce that did the trick. Anyway by the time I endured 3 years of treatment --- and when I finally got 6 months of negative cultures back I was sick to death of the whole routine so I decided to never go back to a doctor again. I'm done I don't care to even know if there's mac in there. Doesn't seem like it to me. I live alone on a little homestead in the country and I work like a 35 year old man. (I'm 71) When I'm chopping wood or cutting and stacking a field of hay with hand tools I think to myself . "I'm cured." My mind says I'm cured and I believe it.

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Arikayce seems so effective for many people. How is it that it is not given first? Maybe it's a business reason!

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4 replies
hbarbh | @hbarbh | Jan 31 2:47pm
In reply to @scoop "Arikayce seems so effective for many people. How is it that it is not given first?..." + (show)
@scoop

Arikayce seems so effective for many people. How is it that it is not given first? Maybe it's a business reason!

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Yes, I wonder that too and wouldn't be surprised by anything in this dog eat dog money maker madness world of greed mentality. "It doesn't seem to be working."
"Who cares! give it to them anyway! We made a whole bunch and we need to use it up!." haha.... Anyway... and the fear aspect. The big 3... those monstrous amounts of antibiotic which had to be wreaking havoc in my body but doing no good? Holy moleys I didn't like that and wished I could just not take them during the third year along with Arikayce..... but the fear factor. I was afraid not to because I wanted the mac gone so badly. Arikayce did the trick that's for sure but not without a cost. It is rough. I couldn't speak for that whole year I was taking it. I lost my voice!! I've always considered myself a more quiet person... not needing to say much. Ha! You don't know how much you want to say something ANYTHING .. until you can't. You might just want to add a little comment... a little come back in a conversation...but ya can't! hahaha! Geez Louise. And it gave me earaches. The pulmonologist finally told me to stop taking it a month or so earlier than a full year because my hearing was at risk. Anyway. .. blab blab blab.. Little ol quiet me is blabbing ... bye.

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bayarea58 | @bayarea58 | Jan 31 8:36pm
In reply to @helen1000 "I believe the reason for me to get MAC is that my parents always gave me..." + (show)
@helen1000

I believe the reason for me to get MAC is that my parents always gave me antibiotics when I was a young child even when it was not necessary. I just need to avoid wheat because i am not intolerant to it. Antibiotics are so toxic. We need vegan food to detoxify our body and keep our gut health.

Jump to this post

I have been vegan since 1993, yet here I am. 🤷‍♀️

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bayarea58 | @bayarea58 | Jan 31 8:38pm
In reply to @scoop "Arikayce seems so effective for many people. How is it that it is not given first?..." + (show)
@scoop

Arikayce seems so effective for many people. How is it that it is not given first? Maybe it's a business reason!

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💰💰💰

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Toni D. | @tcd518 | Feb 2 10:52am
In reply to @scoop "Arikayce seems so effective for many people. How is it that it is not given first?..." + (show)
@scoop

Arikayce seems so effective for many people. How is it that it is not given first? Maybe it's a business reason!

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Scoop, it seems to me that Arikayce is not a first-line treatment because there are other effective, less expensive treatments with fewer and less severe side effects, i.e., the Big 3. The potential side effects of Arikayce are not to be taken lightly. You don't use your big guns unless you absolutely need them!

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 2 2:43pm
In reply to @tcd518 "Scoop, it seems to me that Arikayce is not a first-line treatment because there are other..." + (show)
@tcd518

Scoop, it seems to me that Arikayce is not a first-line treatment because there are other effective, less expensive treatments with fewer and less severe side effects, i.e., the Big 3. The potential side effects of Arikayce are not to be taken lightly. You don't use your big guns unless you absolutely need them!

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Exactly! It is also why people with Bronchiectasis should avoid using Azithromycin for non-MAC infections - so your body doesn't build resistance to it in case you do need to fight MAC.

I personally wish z-Pacs had never been invented - so easy for the doc to prescribe where much less potent antibiotics could work.

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