1. < MAC & Bronchiectasis

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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franie | @franie | Mar 4, 2019
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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I suffered from Shortness of breath, severe fatigue, constant yawning, little energy , severe night sweats , then weight gain then severe hypothyroidism and literally severe low Gamaglobulin levels. In the quest for help and worry; I ended up in a severe depression . When I started coughing up blood and gasping, my internal medicine Dr . Demanded Pulmonologist do a bronchoscopy and Ct. I can’t even tell you how much the antibiotics saved my life. If I don’t get normal rest I will have some days that I am a little Short of breath but I had no choice and for me, I have my life back. I will always be on Levothroxin and Symbicort , IVIG monthly , but the meds were mandatory for me and well worth it in my case.

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franie | @franie | Mar 4, 2019
In reply to @macjane "Many thanks. I heard National Jewish Health in Denver is good. Somewhere I also heard Thomas..." + (show)
@macjane

Many thanks. I heard National Jewish Health in Denver is good. Somewhere I also heard Thomas Jefferson in Philadelphia is quite good as well.

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I actually had my culture and sensitivity double checked with the Jewish Hospital in Denver. I also went to Mayo in Rochester.

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mariierod123 | @mariierod123 | Mar 6, 2019
In reply to @ling123 "MAC usually occurs hand-in-hand with bronchiectasis. We all know that the MAC bacteria exist everywhere. But..." + (show)
@ling123

MAC usually occurs hand-in-hand with bronchiectasis. We all know that the MAC bacteria exist everywhere. But only certain section of the population gets the infection while the rest are not affected. My understanding is that having bronchiectasis is one of the main causes of having MAC infection because our lungs are weekend by the disease and the damaged bronchial tube walls interferes with smooth travel of the phlegm up and down the tubes. When the phlegm gets trapped in the tiny pockets in the bronchial tube walls, the bacteria in the phlegm can fester. People with healthy lungs are unlikely to be infected for that reason. And for the same reason, we can be re-infected by the same bacteria even after being treated with drugs.

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I wasnt sick with lung diease before this infection thats what i do not understand

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2 replies
heathert | @heathert | Mar 6, 2019
In reply to @mariierod123 "I wasnt sick with lung diease before this infection thats what i do not understand" + (show)
@mariierod123

I wasnt sick with lung diease before this infection thats what i do not understand

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@mariierod123 Same with me.

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1 reply
ling123 | @ling123 | Mar 6, 2019
In reply to @mariierod123 "I wasnt sick with lung diease before this infection thats what i do not understand" + (show)
@mariierod123

I wasnt sick with lung diease before this infection thats what i do not understand

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@mariierod123 Although I have had bronchiectasis for many years, I did not have any lung disease, or any other disease, before being diagnosed with MAC infection. I have not been sick since then, either. And I have never been on the drug treatment. Yet I feel just fine and live a normal life. Go figure.

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1 reply
Jo Ann K | @jkiemen | Mar 7, 2019
In reply to @heathert "@mariierod123 Same with me." + (show)
@heathert

@mariierod123 Same with me.

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@mariierod123 I wasn't either, it just came on suddenly and thought I had pneumonia and then was diagnosed with this darn thing.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 8, 2019
In reply to @jweisser "@windwalker I think I need to quit thinking along the lines of 38 and remember I'm..." + (show)
@jweisser

@windwalker I think I need to quit thinking along the lines of 38 and remember I'm 78. I used to clean my whole house in a morning (small house) and now I can't do it in a week. I'm still frustrated because my doctor doesn't think I should be this tired with as few areas in my lungs. This week should be the heart valve test. We haven't worked our way to my legs yet??? Maybe it's my legs refusing to move. I know it's not funny but if I don't laugh I cry.

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@jweisser Hello Jan. I hadn't heard from you in awhile, so I am checking in on you. How are you doing these days? Did you ever get it figured out on what was going on with your legs? How is your energy level? Mine comes and goes, but per usual, by 3 in the afternoon; I hit a brick wall. All things considered, I have been painting the walls in my house, of course doing it piece-meal as I can do it. "A little bit here, and a little bit there'" LOL!

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 8, 2019
In reply to @windwalker "@jweisser Hello Jan. I hadn't heard from you in awhile, so I am checking in on..." + (show)
@windwalker

@jweisser Hello Jan. I hadn't heard from you in awhile, so I am checking in on you. How are you doing these days? Did you ever get it figured out on what was going on with your legs? How is your energy level? Mine comes and goes, but per usual, by 3 in the afternoon; I hit a brick wall. All things considered, I have been painting the walls in my house, of course doing it piece-meal as I can do it. "A little bit here, and a little bit there'" LOL!

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@windwalker Hi Terri - I laughed when I read your description "I hit a brick wall..." That is how I have always described the kind of fatigue I live with. At least mine usually waits until 4:00pm! The only coping strategy I have found is to quit and sit down - have you found anything that allows you to push through when necessary? I have tried naps, food, water, energy drinks...nothing seems to work. Earlier in this journey, I had some success in taking a break around one or two, then I could keep going a bit longer. That seems to have stopped working.

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migizii | @migizii | Mar 9, 2019
In reply to @windwalker "@jweisser Hello Jan. I hadn't heard from you in awhile, so I am checking in on..." + (show)
@windwalker

@jweisser Hello Jan. I hadn't heard from you in awhile, so I am checking in on you. How are you doing these days? Did you ever get it figured out on what was going on with your legs? How is your energy level? Mine comes and goes, but per usual, by 3 in the afternoon; I hit a brick wall. All things considered, I have been painting the walls in my house, of course doing it piece-meal as I can do it. "A little bit here, and a little bit there'" LOL!

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This is really interesting to learn about the “brick wall!” I seem to fight fatigue off and on each day, but almost every afternoon somewhere between 2-4 until about 7pm, it’s like my body is not interested in doing anything but the absolute minimum and I have to really push through when I have things I have to do! I really like my doctor, but he never told me this is a symptom of this illness

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catherine123456 | @catherine123456 | Mar 10, 2019
In reply to @ling123 "@mariierod123 Although I have had bronchiectasis for many years, I did not have any lung disease,..." + (show)
@ling123

@mariierod123 Although I have had bronchiectasis for many years, I did not have any lung disease, or any other disease, before being diagnosed with MAC infection. I have not been sick since then, either. And I have never been on the drug treatment. Yet I feel just fine and live a normal life. Go figure.

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I never knew I had any infection till I had an accident and had a complete body scan .This is when they found problems with my right lung.
They did a sputum test and watch me for about a year then did a second sputum test and confirmed I had MAC . So the doctor started me on 3 antibiotics 3 times a week. I had to change one as I started loosing my hearing. The one they change me to is worse as now I have sever shoulder pain and my body aches all over. I too get very tired and have lost my appetite I am in bed early usually around 8:30
and up around 7 am.I was wondering how many days a week do you take the antibiotics . I only take them three days a week. Is this the
norm?

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