@margaretg

Hello Margaret, Welcome! I am SO glad you found our Forum! I hope you don’t mind if I answer you on our Forum page rather than a private message .. because we have found that sharing with each other really HELPS each other!

I SO understand the fear when you are first diagnosed with MAC and that you must go on the antibiotics. When I was first diagnosed I was just terrified .. in part because I found ZERO places like this Forum to help me through the process of understanding the disease I had just been diagnosed with .. plus just what the journey ahead looked like. That was really why I made that initial post to Mayo in 2011.

Margaret, I really encourage you .. as you have the time and energy to read the past pages of this Forum .. you will learn SO much about your disease .. plus your journey ahead. Plus you will find so many kind positive people here who are sharing your journey right now .. some ahead .. some finished .. but we are all on the same journey! I would especially encourage you to read an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
PLUS MORE GOOD INFO: http://maclungdisease.org/frequently-asked-questions

Since you have not started your meds yet .. I would recommend that you request that you start ONE antibiotic at a time for ONE WEEK .. or at LEAST 4 days before adding a second antibiotic .. so you can tell EXACTLY which/what antibiotic is causing ANY potential side effect and you can isolate it .. hopefully watching for a side effect dwindling etc. THEN introduce a SECOND antibiotic. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it! Plus .. has your doctor told you to get the below baseline testing? If you read back you will see them .. but I will repeat them in case you don’t get to the reading right away:
RECOMMENDED TESTING:
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

So Margaret .. again Welcome .. and keep coming back! Sending you a Hug in this tough time .. we all know what you are going through! Katherine

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