Does anyone have “Mac” days?

Great question, @kathyhg. Let me call in the troops to share their "MAC" day experiences. @ritapearl @extracare808 @bestselfever @msk @tinaesims @jenblalock @reneecbeard @jkiemen @tdrell @windwalker @ling123 @ckscoville @lindam272 @judyhodgern do you have MAC days like Kathy describes - days where you wake up nauseous, foggy and with general malaise that makes getting started a challenge?

What do you do to help?

Jeez Kathy this sounds awful. I’m sorry that I’ve nothing to offer beyond my sympathy. Don

I don't have MAC. I have Cystic Fibrosis with Bronchiectasis, and a chronic infection of a different sort: achromobacter. Sorry I can't give you any help on MAC.

I used to feel nausea in them morning when they changed a manufacturer of my Azithromycin. When they changed it back to the prior manufacturer, it improved. I also felt really bad for at least 24 hours after taking Rifabutin and better on Rifampin.

I'm one of the lucky ones. In September, 2014 I paid a visit to the ER after coughing up large amount of blood and was subsequently diagnosed with MAC. However, after this initial scare, I have been living symptom-free, without any recurrence and not being on any medication for the past 7+ years. My last visit to the pulmonologist was two years ago. He had decided that I was healthy enough to not warrant further visitation with him unless situation changes. So I'm very sorry that I'm not able to provide any insight that will be useful to you. Are you sure your symptoms are caused by MAC? Are you on MAC medication? If you are, could that cause your discomfort? I have heard that many people experience very unpleasant side effects from MAC medications. Have you talked to your pulmonologist to see what he/she has to say about these symptoms? Have you discussed this with your primary care physician to see if these symptoms could have another cause?

Oh yes! I can relate. Some days I wake up feeling so totally exhausted. I always feel sure that I’m coming down with something very serious. Then the next day; or even later the same day; I feel better.

Thanks for your comments, everyone, and especially to Claire for helping me feel like I’m not alone in this. And, Claire, I also feel like I’m coming down with a bad flu or an infection and then I can also feel better later in the day or the next day. I’ve tried to connect it with activity, sleep, diet, etc but it still feels completely random. It has become a day when I have to cancel whatever I have planned and take it easy until it passes.

I have seen every specialist that I can think of but I haven’t gotten any explanation beyond the fact that my body is constantly fighting an infection and it can be manifested this way.

Thanks again,

Hi there, I’m going to comment as the daughter who is involved in the care of my dear mom. Although she is 88 she appears at least 10 years younger and lead an active life until this MAC. Some days she wakes up and tells me she just can’t do it anymore. She is exhausted and has no appetite. However, she says it’s amazing, after she is up and moving it gets better. I’m sure it’s the MAC drugs. She has been on multiple combinations for years now. Some are harder on her and she has to discontinue. Working with an ID doctor and pulmonologist to find what works best. It’s very hard, but she is not giving up. Hang in there!

Hi Kathy,
I can relate to that! I have days when I wake up and feel nauseous and my body feels, for lack of a better descriptor, just out of sorts. I have no energy, my stomach hurts, difficult to think clearly. Like you, I have not been able to tie it to anything I ate or did the day before. My diet is super clean and controlled. I too am usually better later in the day and sometimes it takes 2 or 3 days to feel normal again. I have had these "episodes" for a few years now. I have never been treated for my MAC so it is not the drugs. I have not decided if it can be chalked up to MAC, but no one has found anything else going on, nothing weird in bloodwork or any other test/workup so far, so I just live with it now because I got tired of trying to figure it out. I am fortunate to work from home, so I just give myself the grace to take it easy those days and know it will get better. I'll let you know if someday I find a better explanation.

@kathyhg I have been off MAC meds for a few years now but I do remember having those days. The rifampin in particular caused brain fog and confusion to the point that I had to stop taking it. You might adjust your medication schedule but I agree with @shooei and would suggest, if you are able, to take it easy that day. @lindam272