Hi, I have not posted in awhile as became very sick and hospitalized. I have lost so much weight but, more concerned as I lost my muscle tone and my skin looks so horrible it scared me. I have gotten past this and have reached out to NJH in hopes they can do something. I recently had a Picc Line inserted and after 1 week was advised I am resistant to the Amikacin. Picc line removed this past Saturday. My other options are to start Clofazimine or Bedaquiline, not sure if I will take either one with the big 3 antibiotics as I feel so unwell just about all the time, and had horrible side effects from the amikacin (picc line). I am on oxygen 4 litters and higher with any excercion. I don't really exercise as my oxygen will drop pretty low and I have to recovery with supplemental oxygen. NJH has reached out and my Kaiser doctor did submit a referral they are reluctant as I would need to travel about 9 hours and recently had a oxygen evaluation and failed the test for a portable concentrator. Not sure how I can travel with so many tanks of oxygen. My body is saying I need a break from the meds as I have been on the big 3 + Amikacin inhaled + steroids for 8 months over 2 years with the steroids. Anyone else just stop taking the meds and what did you experience and now how are you doing. I do airway clearance 2 x a day and take vitamins. Please any advise appreciated...

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