1. < MAC & Bronchiectasis

Low energy

Posted by britchic @britchic, Oct 13 2:09pm

Diagnosed with MAC over 18 months ago and was put on the big 3. After 5 months I was taken off riamprin due to having adverse reaction to it. Continued on with 2 antibiotics only to be told I needed to add arikacye . Since being on arikayce I’m more breathless and have zero energy wanting to sleep all the time. I have no ambition to do anything and if I’m honest I’m pretty depressed even though I take a low dose of antidepressant. I have a very supportive husband who works long hours and then comes home and cooks dinner which makes me feel guilty and so the vicious cycle starts again. Anyone else feel like this?

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irene5 Irene Estes | @irene5 | Oct 14 3:33am

I am truly sorry you are feeling this way. It is not a great quality of life. All I can say is part of the journey with MAC includes exhaustion. Maybe not for some but if you were to look it up it says that. Arikayce is a great med for curing MAC. I would suggest drinking Ensure and taking a good vitamin and probiotic brand like Garden of Life. That is what I did on the advice of my ID doctor. And maybe an increase in your anti depressant might help as well. My husband knew I couldn’t cook at the end of the day. We started getting meal delivery that my son suggested. I can’t remember the name of the company. It’s not forever - although it may seem like it sometimes- I can honestly say there is a light at the end of the tunnel. I know that for sure. Praying for you. Irene5

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1 reply
brittany123 | @brittany123 | Oct 14 11:13am

You said you were PUT on the big 3. Were you given a choice? I don't know how bad your infection is, but when I was diagnosed with MAC 11 years ago I was told I could go on antibiotics or see if I could maintain my health with nebulizer treatment and airway clearance. I asked my doctor if after being on antibiotics and getting rid of MAC could I easily become re-infected, and she said yes, so I decided against it. I have never had an exacerbation and my energy level is pretty good (for a 77 year old.) I know my case may not be typical, but I hate to think there are others with the same degree of infection that I have who are suffering needlessly.

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imatcha33 | @imatcha33 | Oct 14 5:55pm

@brittany123 ... I have had the same experience as you. I find that there are times when I feel really tired but I want to think it's just age and hard work in the garden or from a long walk with the dogs.
I was told by an infectious disease specialist that if I decided to treat, the recurrence within 5 years after completing the antibiotics was over 95%. I don't feel sick and I take precautions (wear a mask when I am in crowded indoor spaces, etc) and have been fortunate so far. When I read about what others are experiencing I feel really bad for them but am grateful I'm not so sick. I cough a fair amount but it's unproductive. Occasionally I do cough up something ugly but not too often. I have tried to do airway clearance with little success. I have a nebulizer but honestly don't use it much. I've had pneumonia several times starting when I was in 9th grade (I'm 76 now). I think that's probably where the bronchiectasis got started. I was diagnosed with MAC about 4 years ago. I hope to carry on with my life as long as possible. Thank you for sharing. your experience.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 14 9:25pm
In reply to @imatcha33 "@brittany123 ... I have had the same experience as you. I find that there are times..." + (show)
@imatcha33

@brittany123 ... I have had the same experience as you. I find that there are times when I feel really tired but I want to think it's just age and hard work in the garden or from a long walk with the dogs.
I was told by an infectious disease specialist that if I decided to treat, the recurrence within 5 years after completing the antibiotics was over 95%. I don't feel sick and I take precautions (wear a mask when I am in crowded indoor spaces, etc) and have been fortunate so far. When I read about what others are experiencing I feel really bad for them but am grateful I'm not so sick. I cough a fair amount but it's unproductive. Occasionally I do cough up something ugly but not too often. I have tried to do airway clearance with little success. I have a nebulizer but honestly don't use it much. I've had pneumonia several times starting when I was in 9th grade (I'm 76 now). I think that's probably where the bronchiectasis got started. I was diagnosed with MAC about 4 years ago. I hope to carry on with my life as long as possible. Thank you for sharing. your experience.

Jump to this post

@imatcha I really think that in the past, before the importance of nebulizing saline, daily airway clearance and exercise, infections recurrent much more often.

But, many of us here have established routines that keep us healthy. I stopped antibiotics 58 months ago, and feel as healthy as I ever have in the past 8 years.
The gold standard will be my CT tomorrow and repeat Pulmonary function test (the last one was done while I was at the end of Covid.) Not sure if I will do a sputum culture as I am not very productive.

I would encourage you to use your neb a couple times a week with saline - there is coming to be more evidence that it helps. I do mine 2-3x week, and usually I exercise as my form of airway clearance. A brisk walk or 30 minutes of yoga bring up more mucus for me than any other technique.

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4 replies
helen1000 | @helen1000 | Oct 15 8:24am
In reply to @sueinmn "@imatcha I really think that in the past, before the importance of nebulizing saline, daily airway..." + (show)
@sueinmn

@imatcha I really think that in the past, before the importance of nebulizing saline, daily airway clearance and exercise, infections recurrent much more often.

But, many of us here have established routines that keep us healthy. I stopped antibiotics 58 months ago, and feel as healthy as I ever have in the past 8 years.
The gold standard will be my CT tomorrow and repeat Pulmonary function test (the last one was done while I was at the end of Covid.) Not sure if I will do a sputum culture as I am not very productive.

I would encourage you to use your neb a couple times a week with saline - there is coming to be more evidence that it helps. I do mine 2-3x week, and usually I exercise as my form of airway clearance. A brisk walk or 30 minutes of yoga bring up more mucus for me than any other technique.

Jump to this post

Miso soup and goat milk cheese are both good for weight gain and digestion.

REPLY
Toni D. | @tcd518 | Oct 15 8:28am
In reply to @sueinmn "@imatcha I really think that in the past, before the importance of nebulizing saline, daily airway..." + (show)
@sueinmn

@imatcha I really think that in the past, before the importance of nebulizing saline, daily airway clearance and exercise, infections recurrent much more often.

But, many of us here have established routines that keep us healthy. I stopped antibiotics 58 months ago, and feel as healthy as I ever have in the past 8 years.
The gold standard will be my CT tomorrow and repeat Pulmonary function test (the last one was done while I was at the end of Covid.) Not sure if I will do a sputum culture as I am not very productive.

I would encourage you to use your neb a couple times a week with saline - there is coming to be more evidence that it helps. I do mine 2-3x week, and usually I exercise as my form of airway clearance. A brisk walk or 30 minutes of yoga bring up more mucus for me than any other technique.

Jump to this post

Good luck tomorrow, Sue, with the CT and PFT. You know everyone here is rooting for you!

REPLY
lilianna | @lilianna | Oct 15 8:52am
In reply to @sueinmn "@imatcha I really think that in the past, before the importance of nebulizing saline, daily airway..." + (show)
@sueinmn

@imatcha I really think that in the past, before the importance of nebulizing saline, daily airway clearance and exercise, infections recurrent much more often.

But, many of us here have established routines that keep us healthy. I stopped antibiotics 58 months ago, and feel as healthy as I ever have in the past 8 years.
The gold standard will be my CT tomorrow and repeat Pulmonary function test (the last one was done while I was at the end of Covid.) Not sure if I will do a sputum culture as I am not very productive.

I would encourage you to use your neb a couple times a week with saline - there is coming to be more evidence that it helps. I do mine 2-3x week, and usually I exercise as my form of airway clearance. A brisk walk or 30 minutes of yoga bring up more mucus for me than any other technique.

Jump to this post

Thinking about you Sue. Let us know how it goes. Your example is my hope. Thank you

REPLY
suzek | @suzek | Oct 15 9:39am

May the tests go well tomorrow, Sue.

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suzek | @suzek | Oct 15 9:52am

britchic (@britchic)
It sounds like you’re describing me with the exception that I’m still on Rifampin not Arikayce.
I’ve been on the meds for 6 weeks. I figured out that the meds are interfering with HRT and my thyroid meds which I feel is the main culprit for my exhaustion and chills. I called the ID yesterday and he won’t take me off the meds. I wasn’t given the option of wait and see.
I am going to UAB in mid November and I try not to think about how far away that is. According to my Pulmonologist my case is fairly mild with no cavities.
I truly feel bad for you.

REPLY
suzek | @suzek | Oct 15 10:07am
In reply to @irene5 "I am truly sorry you are feeling this way. It is not a great quality of..." + (show)
@irene5

I am truly sorry you are feeling this way. It is not a great quality of life. All I can say is part of the journey with MAC includes exhaustion. Maybe not for some but if you were to look it up it says that. Arikayce is a great med for curing MAC. I would suggest drinking Ensure and taking a good vitamin and probiotic brand like Garden of Life. That is what I did on the advice of my ID doctor. And maybe an increase in your anti depressant might help as well. My husband knew I couldn’t cook at the end of the day. We started getting meal delivery that my son suggested. I can’t remember the name of the company. It’s not forever - although it may seem like it sometimes- I can honestly say there is a light at the end of the tunnel. I know that for sure. Praying for you. Irene5

Jump to this post

May I ask which Garden of Life probiotic you take? I checked Amazon and there were several.
Thanks!

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