Hi, MAC is hard to kill. Are you taking the meds everyday or three times a week? Ethambutol is based on your weight. I see my ID doc every month and he checks to make sure the ethambutol is at the correct dosage for my weight, even a couple pounds difference can make a difference in the dosage. For me, I think part of the exhaustion and malaise was due to the meds. I don't know anything about Duke, I haven't gone to NJH (National Jewish Health) but know they are #1 for NTM patients. I tried to get an appointment there while Covid was more active and it took over 7 months plus to get a response. by that time we knew I needed surgery so had the surgery at Mayo, which was closer. It just may take a long while to get in the NJH although things should be a bit better, It'll still take months from the day you send all you medical files in to when they will call to take you. Huff cough, boiling water for drinking, taking baths versus showers (cleaning shower heads regularly if you do), masking while gardening, making sure your Vit. D and Vit A are in normal range (I researched the later on PubMed and brought the articles to my MD who tested and found I was low on both. Basically doing everything you can to decrease your exposure since it's everywhere. I've been a long hauler and on five antibiotics besides using the vest and sodium chloride solution. Since surgery, I've been negative. It's made a world of difference finding that hidden spot and dealing with it. Only a couple more months and I'm off all meds! Praise God. Blessings to you on your journey, be patient and determined. Hope may seem impossible at times, but it's not, it's just around the corner.
Thank you do much for your thoughts. It gives me hope. My next appointment is Nov 1 and will see what she gas to say. Recently saw a video of Dr Hewitt and she mentions if after 6 mo still no negative sputum you should add amikacin. Do you have thoughts on that.?
Again thank you.