1. < MAC & Bronchiectasis

Aspergillus with MAC

Posted by franthony @franthony, Feb 20, 2019

Has anyone else picked up aspergillus (pulmonary fungal infection) while being treated for MAC? MY ID doc has it on watch because it can't be treated while I am being treated for the MAC, due to drug interactions. It doesn't help that my local clinic threw out my last two culture specimens for fungus because there was not enough for AFB cultures even though I wrote on big Sharpie twice on the second one was for fungus. I also have colonized pseudomonas, and am not currently being treated for that.

If you do have this situation, how has your doc been handling it?

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franthony | @franthony | Feb 23, 2019
In reply to @franthony "No, just the trifecta of antibiotics. the first sample of aspergillus said" + (show)
@franthony

No, just the trifecta of antibiotics. the first sample of aspergillus said

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My answer above got cut off, I see. My cat must have been helping me type.

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Brenda R. | @brigby | Feb 23, 2019
In reply to @windwalker "@heathert Thank you so much for the kind words. I had been doing really well, my..." + (show)
@windwalker

@heathert Thank you so much for the kind words. I had been doing really well, my shortness of breath just started getting worse over this winter. It has been bad before and then got a bit better, so I am optimistic that I can pull out of this. It is probably time for me to go into pulmonary rehab. I try to always be cheerful and upbeat, it is just how I like to be.

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@windwalker we appreciate you!

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1 reply
heathert | @heathert | Feb 23, 2019
In reply to @windwalker "@heathert Thank you so much for the kind words. I had been doing really well, my..." + (show)
@windwalker

@heathert Thank you so much for the kind words. I had been doing really well, my shortness of breath just started getting worse over this winter. It has been bad before and then got a bit better, so I am optimistic that I can pull out of this. It is probably time for me to go into pulmonary rehab. I try to always be cheerful and upbeat, it is just how I like to be.

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@windwalker I know you can do this and get better again, I will look forward to it.

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marilynk | @marilynk | Feb 23, 2019
In reply to @heathert "@windwalker I am sorry to hear that, I had no idea you were so short of..." + (show)
@heathert

@windwalker I am sorry to hear that, I had no idea you were so short of breath and felt so bad you always sound so upbeat and helpful and often out bike riding in summer with your wee dog! We are so lucky to have you on here and really really appreciate all your help, an inspiration to us all. Friggin genetics, I have a CF gene, I guess you have been tested for that. I hope you Stay well over winter avoid those nasty bugs. Bring on a cure! Take care Heather

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I also have a CF gene. I was diagnosed with Bronchiectasis, nocardia and Mac in 2003 at National Jewish Research Center. I was on the three meds for a year. Then was treated with bactram for a year for the nocardia. Been treated off and on thru the years for Nocardia. I finished another year on bactram about 6 months ago and have just recently been diagnosed with Mac again. So I’m back on the big 3 meds. I seem to tolerate the meds ok - just getting tired of always being on ‘something’. Sure glad I found this site . It does help to read and compare - especially how we all react to the meds. What works and what doesn’t.

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1 reply
Barbara Ann | @bschaper2 | Feb 24, 2019
In reply to @brigby "@windwalker we appreciate you!" + (show)
@brigby

@windwalker we appreciate you!

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@windwalker - I second this -- your positive attitude and knowledge and assistance have gotten me through my journey with my positive attitude in place -- thank you!

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heathert | @heathert | Feb 26, 2019
In reply to @marilynk "I also have a CF gene. I was diagnosed with Bronchiectasis, nocardia and Mac in 2003..." + (show)
@marilynk

I also have a CF gene. I was diagnosed with Bronchiectasis, nocardia and Mac in 2003 at National Jewish Research Center. I was on the three meds for a year. Then was treated with bactram for a year for the nocardia. Been treated off and on thru the years for Nocardia. I finished another year on bactram about 6 months ago and have just recently been diagnosed with Mac again. So I’m back on the big 3 meds. I seem to tolerate the meds ok - just getting tired of always being on ‘something’. Sure glad I found this site . It does help to read and compare - especially how we all react to the meds. What works and what doesn’t.

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@marilynk I am sick of being of meds too, however think im in it for the long haul!

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1 reply
marilynk | @marilynk | Feb 26, 2019
In reply to @heathert "@marilynk I am sick of being of meds too, however think im in it for the..." + (show)
@heathert

@marilynk I am sick of being of meds too, however think im in it for the long haul!

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Just had to add cipro to the mix as doc thinks t may have pseudomonas-started coughing blood and yellow sputum. Just three doses and doing better already so that’s encouraging.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 6, 2019
In reply to @windwalker "Here is the saline (sodium chloride) chart Across the top is the % (strength) of the..." + (show)
@windwalker

Here is the saline (sodium chloride) chart Across the top is the % (strength) of the saline. Down the far left column is the list of the bacteriums that it kills. The chart shows that 7% saline will help to kill back mac, and mai. I presently test negative on everything, but doing the saline treatment helps keep it away. I hope this helps you to understand why we use it.

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@glendamoseley did you get the chart?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 7, 2019
In reply to @windwalker "Here is the saline (sodium chloride) chart Across the top is the % (strength) of the..." + (show)
@windwalker

Here is the saline (sodium chloride) chart Across the top is the % (strength) of the saline. Down the far left column is the list of the bacteriums that it kills. The chart shows that 7% saline will help to kill back mac, and mai. I presently test negative on everything, but doing the saline treatment helps keep it away. I hope this helps you to understand why we use it.

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@glendamoseley, can you see this post with the saline chart? Click on the blue highlighted conversation above and the chart will open.

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dulwich | @dulwich | Apr 9, 2019
In reply to @windwalker "@franthony This is a lengthy and technical article about proof of sodium chloride helping to eliminate..." + (show)
@windwalker

@franthony This is a lengthy and technical article about proof of sodium chloride helping to eliminate various strains of organisms and bacteriums. You can print it out just the link address for your doctor to look up. I will isolate the one chart and send it separate so that you do not have to shuffle through all of the text. The charts are located near the end of the article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/

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Thanks for this article. I see that a number of people are using 7% saline in their nebulizer but the doctors I have seen have only recommended 3%. Would be interested in comments on this. Also for brigby, there are devices that can help you clear your airways more easily, even if you have limited pulmonary function and also medications to help liquefy sputum and clear your lungs. I wonder whether you were able to discuss this with your doctor?

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