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Pneumonia, MAC and Aspergillus ?!?

MAC & Bronchiectasis | Last Active: Nov 19 3:13pm | Replies (20)

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An initial lung scan showed 'schmootz' in the right lung. Pulmonologist told me it was "Avium but we usually don't treat because treatment is so difficult". After complaining and sputum tests only revealing candida, Dr. finally order bronchoscopy with lavage and cultures, which revealed Aspergillius Niger and RML syndrome, caused by infection. I experienced 3 1/2 weeks relief-no coughing, but then cough came roaring back. While waiting for treatment for Aspergillus, Dr. had me do blood work-a month after bronchoscopy which revealed i was now negative for Aspergillus. After a few more weeks of cultures growing, Avium showed up. I was asked to see infectious disease dr. and met with his nurse practitioner who prescribed 3 different antibiotics, 3 times a week "probably for 18 months". I have not yet begun them as my primary wants a base-line EKG, which i intend to do. Also need to have appointment with eye Dr. as one of those meds can cause optical issues. I dread these antibiotics as i know i generally don't tolerate them well. Here is the conundrum i am facing, my symptoms seem to be lessening, I am not coughing the way i was. I am taking the Tessalon Perle to help suppress cough in the night so that I may sleep but that generally wears off, etc. Can i avoid taking these antibiotics is my question. Was it the Aspergillus which was making me cough, not the Avium? How does one know?! Do i need to take them to get rid of Avium anyway---when i asked the nurse practitioner what is the risk of not treating Avium, she answered, "it can get worse." Would love to hear your thoughts. Thank you

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Replies to "An initial lung scan showed 'schmootz' in the right lung. Pulmonologist told me it was "Avium..."

@jenniferlp Your pulmonologist's statement "...it was "Avium but we usually don't treat because treatment is so difficult..." tells me they may not be totally familiar with managing and treating Bronchiectasis and MAC/NTM. This is not an indictment - both are rare, and many specialists may only see a case or two per year, compared to dealing with asthma and COPD every day.

Do you have access to one of the Bronchiectasis Care Centers listed below?
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/