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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 9, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

Jump to this post

@tdtell Thanks Terri. I love Chihuly! I am very excited about the trip, if I ever get there!! I was supposed to be there by 3 today. Flight got delayed 2 hrs due to severe thunderstorms in Chicago. Then no available flights to Rochester. (They were all booked) So, will try it again tomorrow....

REPLY
tdrell | @tdrell | Jun 9, 2018

@windwalker ...terri...what a terrible disapointment.
I will think of you tomorrow and send the white light that you make it!!! Terri ...tdrell

REPLY
4 replies
Flib | @flib | Jun 9, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

Jump to this post

Thanks,Justin.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 9, 2018
In reply to @tdrell "@windwalker ...terri...what a terrible disapointment. I will think of you tomorrow and send the white light..." + (show)
@tdrell

@windwalker ...terri...what a terrible disapointment.
I will think of you tomorrow and send the white light that you make it!!! Terri ...tdrell

Jump to this post

@tdrell Thank you Terri!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 9, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

Jump to this post

@JustinMcClanahan Thank you for posting this link, Justin. This is good to know. I will tag another member I think may have looked into this as well. @nick52.

REPLY
rmason | @rmason | Jun 10, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

Jump to this post

@windwalker -Terri-I have been thinking about your doctors statement about “treating” your bronchiectasis not MAC-since bronchiectasis doesn’t get better do you think he means he’s preventing it from worsening?
PS-hope you have a good trip to Mayo in MN!
Roxanne

REPLY
soflo | @soflo | Jun 10, 2018
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 🙂

Jump to this post

May I ask which meds do you take. I have Mac and experience everything you just mentioned. I started 3 antbiotics for 2 weeks but stopped. Thank-you 🙂

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2018
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 🙂

Jump to this post

@soflo When you respond to these posts, please use the @name at the begimning like you see here that I did. That way it will connect the conversation to the post you are replying to and also the person you are directing it to. Thank you.

REPLY
franthony | @franthony | Jun 10, 2018
In reply to @tdrell "@windwalker ...terri...what a terrible disapointment. I will think of you tomorrow and send the white light..." + (show)
@tdrell

@windwalker ...terri...what a terrible disapointment.
I will think of you tomorrow and send the white light that you make it!!! Terri ...tdrell

Jump to this post

Terri, are you in Minnesota? If so, anywhere near the TC? I don't know of anyone else with MAC, and it would be nice to meet.

REPLY
soflo | @soflo | Jun 10, 2018

@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now I think I got it lol... responding to your questions I live in South Florida, I do have both mac/bronc and right now I have difficulty breathing at times, I don’t have a cough but I do cough up mucus in the morning, fatigue, brain fog, pains in my rib cage, and over the years most of the symptoms were blamed on menopause. Thank goodness for my cardiologist saw something on my lungs which started this journey. A CT of my lungs shows nodules. So I started the 3 antibiotic treatment for two weeks but as I said I don’t know that my body can handle
It. My doctor will understand when I tell him I should get a nebulizer saline flush? So Terri I am very nervous as to which path to take because I just don’t know. I want to be proactive and I’d like to know naturally what else I can do to keep my lungs healthy from deteriorating even more. This site is amazing and I am so happy to have stumbled upon you all 🙂

REPLY
5 replies
View MoreView Less
Please sign in or register to post a reply.