Anyone else have MAC & Aspergillus Nidulans infection?

Posted by sl63 @sl63, Jun 11 5:26pm

I have both MAC and Aspergillus Nidulans lung infections. I was diagnosed about 6 months ago, but they think I’ve had it for years, because of the number of nodules, I guess. My ID Dr. wants to treat the MAC first, he says he thinks it’s causing more damage, but won’t explain how he came to that conclusion. I haven’t started treatment, because I don’t know which one to treat first for sure. Does anyone else have both, and which did u treat first?

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@sl63 Welcome to Mayo Connect, where patients and caregivers share their medical journeys.
Have you done any reading or studying about aspergillus? Unless it is causing specific problems, it is usually not treated because it is so difficult to eradicate, and antifungal drugs can be so hard on kidneys and liver.
Here is what Mayo Clinic has to say about Aspergillus:
https://www.mayoclinic.org/diseases-conditions/aspergillosis/diagnosis-treatment/drc-20369623

On the other hand, there is a quite specific protocol for when to treat MAC, and the presence of numerous nodules can be an indicator of the severity of the infection. Do you have other symptoms as well, like fatigue, cough or weight loss?

Is there a particular reason you are reluctant to rely on this doctor's advice?

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@sueinmn

@sl63 Welcome to Mayo Connect, where patients and caregivers share their medical journeys.
Have you done any reading or studying about aspergillus? Unless it is causing specific problems, it is usually not treated because it is so difficult to eradicate, and antifungal drugs can be so hard on kidneys and liver.
Here is what Mayo Clinic has to say about Aspergillus:
https://www.mayoclinic.org/diseases-conditions/aspergillosis/diagnosis-treatment/drc-20369623

On the other hand, there is a quite specific protocol for when to treat MAC, and the presence of numerous nodules can be an indicator of the severity of the infection. Do you have other symptoms as well, like fatigue, cough or weight loss?

Is there a particular reason you are reluctant to rely on this doctor's advice?

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I’ve always been underweight, and now I’ve actually gained weight, by supplementing my diet with a Boost very high calorie drink on days I don’t get enough calories. I do have days I’m very fatigued, but I also don’t sleep well, and some days I need to cough a more and others not at all. Some days my chest fills tight and it feels harder to breathe and I feel like there’s stuff in my lungs when I cough, ( I usually have to make myself cough) but I can’t cough anything up. The Dr. I have hasn’t explained anything to me about my condition, what the treatment plan looks like, only to take the medication and that it will make me sick, has never asked about symptoms, and doesn’t like to answer any questions I have.

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