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Extreme fatigue with MAC

Posted by src3acs @src3acs, Feb 26, 2018

Good Morning, I am new here so this may have been discussed before. I was diagnosed with MAC in 2012 after I was diagnosed with breast cancer. I had a biopsy and lung wedge resection...both confirmed the MAC. In 2015 I had a bronchoscope done which again confirmed the MAC and bronchiectasis. I have seen a Pulmonologist, infectious disease and my primary care doctor. Everyone seems up in the air whether to treat or not. They seem to be leaving the decision up to me. I don't have a cough, I do have some shortness of breath occasionally but I am always tired. No matter how much I rest or sleep.....I am tired and sometimes exhausted after minor activity. Is fatigue a main symptom of the disease. Would treatment help my fatigue or make is worse. Thank you!

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circleup | @circleup | 2 days ago
In reply to @src3acs "Hi there...thank you for responding. I have had a PET scan, CT scan every year. Had..." + (show)
@src3acs

Hi there...thank you for responding. I have had a PET scan, CT scan every year. Had a bronch....blood work and had my heart check. Only MAC and Bronchiectasis results. My fatigue is far worse than my shortness of breath. My husband is convinced that my SOB is from the MAC and wants me to get treated. The doctors are usually ready to treat then my CT doesn't show change so they say.... "Well you can put off the treatment if you want to". I'm just confused. Do I or don't I need treatment. And....my main questions, is fatigue a big part of MAC? I understand you aren't a doctor. I guess I am venting and asking questions at the same time. Thank you 🙂

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Like you my only symptoms is SOB and the fatigue. . . . all three of my doctors dont seem concerned about those two issues. 6months of tx with the big three meds. My CT scans are no better or no worse. Dont know what to do. Looking for a doctor who has clinical experience treating MAI.

REPLY
circleup | @circleup | 2 days ago
In reply to @src3acs "Hi Mary1944, did you have the fatigue before treatment? I am trying to determine if my..." + (show)
@src3acs

Hi Mary1944, did you have the fatigue before treatment? I am trying to determine if my fatigue is a symptom of the MAC.

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Same here. . . .doctors wont comment whether the fatigue is disease or drug related.

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1 reply
maryjanechilds | @maryjanechilds | 1 day ago

Yes, fatigue and feeling ill were my symptoms and they got so bad that I was practically an invalid. Treatment was essential for me and though I still suffer from fatigue (I believe from the effects of long term MAC) I am much improved.

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Mentor
Sue, Volunteer Mentor | @sueinmn | 1 day ago
In reply to @circleup "Same here. . . .doctors wont comment whether the fatigue is disease or drug related." + (show)
@circleup

Same here. . . .doctors wont comment whether the fatigue is disease or drug related.

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I think you said you are taking the antibiotics every day - my experience was that when I did that, the fatigue was almost crushing - I had to do everything in 20-30 minute blocks with a rest in between.

Have you found a doctor or clinic that specializes in treating NTM?

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