Talk to me about your MAC journey please
Hi, I was misdiagnosed 3 years ago when they said I had T.B. couldn't see anyone for 8 months. No leaving my home. Horrible strong medication that made my body feel horrible. The medication had a toll on my body plus i was still very sick. About a half a year ago I was sent to a infectious disease doctor by me. He diagnosed me with Mac. I never had T.b! All the meds he was given me at once was to much for me to bare. He would take me off a med add another one. Yet he didn't know what med was messing with my body so I switched to a infectious diease doctor in Madison Wis. I love them! Started me on one med each week to make sure of no side effects. I had infusions at the cancer center 3xs a week for 3 months of antibiotics. That was rough. Plus 3 other meds 5 every day. I finished the infusions the end of November. I am still on 3 meds 5x day. I'm much better but not quit out of the woods. I have to do 3 more sputum test to see if I still have it. If I'm not still active, I take those meds for 12 to 15 more months. If I am?
Does anyone have or did have Mac? I really need to relate to someone 🙁
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I don’t have MAC. As I said in post, my cultures were negative and I am currently doing well with the bronchiectasis and airway clearance.
Hi I have MAC. Diagnosed back in 2016 after symptoms of coughing, lethargy and coughing blood. Originally diagnosed after having been tested for coronary calcium score. Currently taking the big 3 Rifampicin, Azithromycin and now clofazimine in lieu of ethambutol as I experienced peripheral neuropathy tingling in hands and feet immediately on the 1600mg prescribed. After reporting effects to hospital several phone calls later it took 17 days to get a call back. I currently, 3 weeks later still have this problem with one toe being numb. I get very tired on these drugs but will persevere for now!