1. < MAC & Bronchiectasis

Talk to me about your MAC journey please

Posted by kimba78 @kimba78, Mar 3 12:47pm

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 🙁

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pacathy | @pacathy | Mar 6 7:22am
In reply to @kimba78 "Hi Pacathy, I'm sorry you have MAC. I know the meds mess up your body to...." + (show)
@kimba78

Hi Pacathy,
I'm sorry you have MAC. I know the meds mess up your body to.
After 3xs a wk for three months on a very high does of antibiotics, Infusions. It was not fun at all, but I got through it, and I feel much better as well. Im on strong meds for MAC. I take 5 a day for the last 5 months. As soon as they do 3 sputum test to see where I am. If my 3 test comes back all 3 pass I start 12 to 15 more months on the meds.

Are you seeing a infectious diease doctor?
I don't know what state you are in but I am going to UW in Madison Wis. A specialist for MAC. He is Awsome. I would highly suggest you go to a infectious doctor. I've been through many doctors through the years. They tried to help me, but I have found other doctors just dont undersunderstand MAC.

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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.

REPLY
cd33 | @cd33 | Mar 7 3:34pm

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!

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