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May 25, 2017 · Question regarding lung surgery in MAC & Bronchiectasis

I too have been on 3 meds for 1 year and the sputum comes back negative but the CT and xrays show the cavities and other area not changing or getting worse. I had a scope put in my lungs to take biopsies and fluid samples. They came back positive after 9 days for MAC. So they sent the cultures to NJH for a susceptibility test and found out 2 of the drugs I was taking were resistant when tested separately and only moderate together. So now they are talking either trying Clofazimine or surgery. My local ID doc is sending all my notes and scans to NJH for second opinion. Has anyone else taken Clofazimine? It is going to take 1 month to get the drug as you can only get it from the FDA because it is not on the market anymore but it is sometimes used for TB when nothing else works.
Kate

May 20, 2017 · Do Bronchiectasis and MAC go together? in MAC & Bronchiectasis

Hello Teresa,

I am new to this blog as well. I have not had this side effect after almost 1 year. I am on 3 antibiotics daily and go for an eye exam every 6-8 weeks as well as a blood draw for liver function. I am just now finding out that it may effect my hearing. My doctor or pharmacist never mentioned about hearing loss. This is something I will check into.

Thanks,
Kate

Kate

May 20, 2017 · MAC antibiotics and side effects in MAC & Bronchiectasis

Hello Fransav,

I was diagnosed one year ago and I am on the 3 drug cocktail every day since. It is my understanding that a low grade fever is from the illness not the drug. When diagnosed I was running 99-100 for 5 day and they asked me if I previously had fever and night sweats. My doctor still asks about both.
Just my experience.
Kate

May 20, 2017 · Question regarding lung surgery in MAC & Bronchiectasis

Hello Jen,
I am new to this blog as of today. I started reading through posts about a month ago. From your post of Jan 2, 2017 you mention daily lung clearance. What is this? I have asked my Pulmonologist about a Repertory Therapy or anything I could do to help breath during exercising or to help the wheezing. He told me to use my pulmacort inhaler 2 x a day instead of one. Not the answer I was looking for.
I was diagnosed with MAC June 2016 but they suspect that I had it well before 2007. (An x-ray then showed abnormalities but no doctor followed up) I am currently on the cocktail of 3 antibiotic with signs of it getting worse. We are currently waiting for susceptibility test. My main question is what is daily lung clearance?
Thanks,
Kate