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How is everybody doing?

MAC & Bronchiectasis | Last Active: Sep 20, 2017 | Replies (153)

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@suzylulu

Teri, sorry you are having trouble. I am trying to find the thread that said a mayo doctor prescribed different antibodies to treat Mac instead of big 3. I have been on big 3 twice but was very ill both times. I recall the doctor told her that the big 3 were something of a go to treatment.. Would you let me know any alternative drug therapies you have heard about or read about. Thanks so much and I hope everything improves for you.

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Replies to "Teri, sorry you are having trouble. I am trying to find the thread that said a..."

@suzylulu Thank you , Suzy. I am not as sore as I was from my fall the other day. That was me who said that my dr doesn't like to put people immediately on the BIG THREE when they are first diagnosed. He said that 90% of the time the infection goes away on it's own or he likes to put you on a single antibiotic for awhile to see if that chases it away for awhile. Right now, I am on alternating months of cipro and tobramycin because I had a pseudomonas infection last spring. Before that, I had one colony of MAC growing in 2014 and was placed on alternating monthly meds of cipro and doxycycline. This regimen has worked for me so far. Plus, I do twice daily nebulized 7% saline. In my opinion (and my dr's), every one of us should be doing the saline. Suzy, there are so many variables with our diseases. I don't believe there is a one size fits all solution. I bragged about the tobramycin because it worked for me, yet it made poor Katherine very ill. I am not sure if it was indeed the 'toby' that made her so sick as she was probably experiencing sepsis coming on from her tremendous bacterial load. We all on this forum just have to keep searching for answers and learn all that we can about this. Have you had your sputem tested recently? How are you doing?

Thank you so much Teri. I see the infectious disease doctor next week and wanted his opinion. He has prescribed the big 3 twice and I was deadly ill. Currently I am not on anything. Building strength and weight back.

@suzylulu Hi Suzy. Building strength and weight is a good goal. If you cannot put the weight back on then be on the lookout for infection being active. I went for 142 lbs to 116 lbs in a year's time. Now that I am clear of infection, I have gained 14 lbs back in 9 months time. Honestly, I do not want to gain any more though. But, you know know, it is good to have fighting weight. I hope you will let us know how your dr visit went.

I sure will Teri.. Hope you are having a good week.