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Starting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: May 8 5:56pm | Replies (192)Comment receiving replies
My visit at Duke last Monday to discuss whether to treat or wait went well. Dr Stout was knowledgeable and straight forward explaining what the disease is, the treatments and what to expect. We went over my two recent CT of my lungs and my results of my sputum test.
After discussing my symptoms and scans he recommended treatment.
I agreed and we talked about baseline test which are needed and he felt my Infection disease doctor in Asheville can manage the treatment snd he would be available for consult.
Probably will begin sometime in February and
Would appreciate suggestions on what has worked and what hasn’t
I am more concerned with stomach issues because i have Gerd.
He said taking them at night would work.
Appreciate any thoughts! Miriam
Replies to "My visit at Duke last Monday to discuss whether to treat or wait went well. Dr..."
Also, if you live in the Raleigh NC area I highly recommend Dr Mary Leigh Ann Daniels. She has a very through understanding of MAC and would only treat you if she thought it was necessary.
I would like to point out that any doctor or clinic can make arrangements to have your cultures sent to the labs at NJH for culture, sensitivity and colony count. Each must be specified in the order. My provider in Minnesota has the initial AFB test run at the department of health, then it is sent to NJH. My daughter has a different provider and they do the same.
Sue
Hi Miriam, I moved this discussion to similar discussion that @ritapearl started a few months earlier where she asked "I am beginning the “big three” therapy what should I expect?" In addition to the responses you've already received from fellow members, you may appreciate going back through the earlier response too, starting here: https://connect.mayoclinic.org/discussion/starting-mac-drugs/
What questions, if any, are still weighing on your mind?
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I was diagnosed in 2/20 and have not been treated with any meds, I just do airway clearance 2x daily. I see Dr Huitt at NJ and Dr Daniels at UNC. My cultures have showed Avium, Abscessus and Intracellulare. My colony count has been as low as 5 and as high as 400. I think several factors are taken into consideration before having treatment such as your CT scan, symptoms, and reasons for the Mac infection/bronchiectasis. Also my cultures don't show the same bacteria each time which is a good thing, because I isolate different subspecies of Mac which implies that I am only transiently colonized with NTM. It is really important to see a DR who deals with NTM and Bronchiectasis and who uses a lab that can identify the exact bacteria and number of colonies. Without a good lab I may have been unnecessarily treated. I would definitely hold off on antibiotics until you know exactly what you are dealing with. My NJ DR thinks my Mac is probably caused by refulx so I have to work on getting that under control. I use to go to Duke in Raleigh but they do NOT have a good lab and cannot tell you the bacteria or the colony count. I would go to National Jewish and get a second opinion. Best of luck.