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!

@mariierod123

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

Jump to this post

@mariierod123 Same with me.

REPLY
@mariierod123

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

Jump to this post

@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.

REPLY
@heathert

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

REPLY
@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.

Jump to this post

@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!

REPLY
@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!

Jump to this post

@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.

REPLY
@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!

Jump to this post

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

REPLY
@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.

Jump to this post

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?

REPLY

What pills were these?

REPLY
@poppins

What pills were these?

Jump to this post

The one that effect my hearing was azithromycin.Luckily when I stopped it my hearing came back. I am now on Etibi ,Rofact and moxifloxacin I think I will be changing the moxifloxacin as it was recently on the news about how it can cause problems with the aorta .

REPLY

Just checking to see if I can get in.

REPLY

Jane,
Im so sorry to hear of all your going through. I can tell you of my experience with MAC that the exhaustion has had serious bouts to the point of barely wanting to or being able to move. My last bout of it I went off the big 3 as prescribed and it seemed to stop the cycle. I think only a pulmy with experience in MAC could tell you whether to get treated. I have a feeling its the meds that cause the fatigue .I could be wrong. ONly the truth is the meds are very strong and everyone has there ways of adapting/ or not, biologically that is. For me I think the meds cause the fatigue only if I get the flu and Im not on the meds I dont pick up again and usually its a sign that the bacteria are still lurking around. The other thing that helps with the fatigue is finding just the right balance of exercise and good solid rest are I think top priorities in steering clear of possible problematic side effects.
I hope you are under good care that you trust and keep up the work, its worth every moment.
Deborah

REPLY
@irene5

This is a tough one! In reading the other posts I ran across “ you can put off treatment if you want to.” That is a pretty standard answer when your symptoms are shortness of breath and extreme fatigue. Add loss of 18%body weight for me. The bottom line is that treatment is inevitable. If you wait – maybe – just maybe there will be a less toxic treatment. The reason many doctors leave treatment up to the patient is because the treatment is grueling for most. I have been on it three times and always have to be taken off the meds. Some people are able to tolerate them. Good luck with your decision.

Jump to this post

I was told there is the possibility that you can get over it on your own. My guess would be that would only be the case if a person had a mild case….but it’s just a guess. Is this not true?

REPLY
Please sign in or register to post a reply.