1. < MAC & Bronchiectasis

Tired and weakness after wks

Posted by Wesbig @wesbig, Apr 8 12:49pm

So I was diagnosed with a new strain of Mycobaterium. After being on the big 3 for 2wks I feel tired and run down, is this normal. The good thing is it feels like it is starting to clear my lungs.

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jw87 | @jw87 | Apr 11 12:05pm
In reply to @rstel7272 "JW87, You did not mention your CT scans and radiologist reads. There are signs the radiologist..." + (show)
@rstel7272

JW87, You did not mention your CT scans and radiologist reads. There are signs the radiologist see's when they read the CT scan and the suggests a Echo and/or Echo w/bubbles for further evaluation. After MAC, I developed SVT after finally seeing some cardiologists.

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In reply to Rick, I have had a CT scan every year for the last five years. My pulmonologist always said that nothing had changed, there was no bronchiectasis, That Clinic has the worst patient patient portal and I could not really look up the notes about my CT scans. I took him at his word. When I got fed up with coughing all the time, as it is so embarrassing out in public to be coughing up gunk, I insisted that I be tested for Mac and then he pulls up my CT scan and points out. Oh yeah, there’s bronchiectasis and, oh that looks like a nodule. I was stunned. At that point, I decided to completely change my entire team. Now I get my full medical test results right on my phone Very quickly. The dogs I have now are really on top of it and don’t leave anything unturned. I wish I had done this years ago

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1 reply
jw87 | @jw87 | Apr 11 12:06pm
In reply to @jw87 "In reply to Rick, I have had a CT scan every year for the last five..." + (show)
@jw87

In reply to Rick, I have had a CT scan every year for the last five years. My pulmonologist always said that nothing had changed, there was no bronchiectasis, That Clinic has the worst patient patient portal and I could not really look up the notes about my CT scans. I took him at his word. When I got fed up with coughing all the time, as it is so embarrassing out in public to be coughing up gunk, I insisted that I be tested for Mac and then he pulls up my CT scan and points out. Oh yeah, there’s bronchiectasis and, oh that looks like a nodule. I was stunned. At that point, I decided to completely change my entire team. Now I get my full medical test results right on my phone Very quickly. The dogs I have now are really on top of it and don’t leave anything unturned. I wish I had done this years ago

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Of course, I meant Drs. not dogs

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jw87 | @jw87 | Apr 11 12:09pm
In reply to @rstel7272 "JW87, You did not mention your CT scans and radiologist reads. There are signs the radiologist..." + (show)
@rstel7272

JW87, You did not mention your CT scans and radiologist reads. There are signs the radiologist see's when they read the CT scan and the suggests a Echo and/or Echo w/bubbles for further evaluation. After MAC, I developed SVT after finally seeing some cardiologists.

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Rick, I forgot to mention that I have multiple echocardiograms & a bubble test.

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1 reply
mokie | @mokie | Apr 11 4:09pm
In reply to @suzanne11 "How are you feeling now? I am so tired of my condition, every month I get..." + (show)
@suzanne11

How are you feeling now?
I am so tired of my condition, every month I get really sick. I feel tired and weak. 🙁
I think I want to start big 3. My doctors keep postponing it.

Please sure with mw your experience with being on big 3. 🙏🏽

Thank you,

Suzanne

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Hi, Suzanne11

I think you may benefit from the Big 3. They did not knock out my MAC, but I am still functioning well, and initially, they did make some of the nodules shrink (I had an 18 month regimen). I became resistant to the third drug (not ethambutol or rifampin) but the clarithromycin (I think is what it was). Honestly, my only symptoms were some slight chest tightness (nothing that hurt or was very bad), some fatigue and some diarrhea from the rifampin. Do you have a bad cough and lots of mucus, or what are your current symptoms, beyond being quite tired?

Mokie
MAC diagnosed with bronchiectasis and Gerd (2015 ff)

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Rick | @rstel7272 | Apr 12 9:25am
In reply to @jw87 "Rick, I forgot to mention that I have multiple echocardiograms & a bubble test." + (show)
@jw87

Rick, I forgot to mention that I have multiple echocardiograms & a bubble test.

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Yes, it seems there is no end to the tests and procedures we are subject to. Multiple opinions are certainly a good thing. And yes, there is nothing worse than coughing in public.

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