Aspergillus with MAC

Posted by franthony @franthony, Wed, Feb 20 10:36am

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?

Liked by tdrell

@windwalker

@franthony Hi. This is how the inhaled saline can be beneficial. The saline is 7% sodium chloride. It is inhaled as a mist by using a nebulizer. The benefits are that it adds moisture to the phlegm making it thinner and easier to cough up. Phlegm is often very sticky and clings to the insides of your lungs and bronchial tube. Thick phlegm is attractive to mac and pseudomonas. They look for goo to colonize in. Since you are not coughing, you may not need the saline at this point. You may want to discuss with your dr as to whether it would be a good prophilaxis (preventative measure).

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@franthony I do not cough but inhale saline as a preventative measure.

Liked by alleycatkate

@windwalker

@brigby Hello. No, of course I don't mind sharing. My lung function is at 37 % as of my last Lung Function Test (LFT) last June. I am getting another one done in the next month as my shortness of breath has gotten worse. I have COPD, which is a progressive disease, so it could be that getting worse, or it might be that I have not been to the gym in three months. My severe lung disease is due in part also to something genetic of which they cannot figure out. My diaphragm is totally flat and stiff; so, it requires more effort and concentration to breathe normally. I am on oxygen at night because the conscious effort to breathe diminishes due to sleeping. My 02 levels drop to about 80 many times during the night for periods longer than 5 mins. I must use a portable 02 concentrator when I go to the gym. There is NO way I could exercise without it. This all sounds bad, and it is; but, to meet me, you'd never know it unless you were beside me after taking the stairs. That is when it becomes obvious.

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@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

@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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@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.

@franthony

She didn't say no. I didn't understand how it would be helpful, and with so much to discuss, I think it got left to the side.

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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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Liked by tdrell

@windwalker

@franthony Hi. This is how the inhaled saline can be beneficial. The saline is 7% sodium chloride. It is inhaled as a mist by using a nebulizer. The benefits are that it adds moisture to the phlegm making it thinner and easier to cough up. Phlegm is often very sticky and clings to the insides of your lungs and bronchial tube. Thick phlegm is attractive to mac and pseudomonas. They look for goo to colonize in. Since you are not coughing, you may not need the saline at this point. You may want to discuss with your dr as to whether it would be a good prophilaxis (preventative measure).

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I see my ID doc in three weeks, and will definitely bring it up. Thanks.

@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.

@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!

@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.

@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.

@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!

@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!

@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.

@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?

@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.

@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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