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Extreme fatigue with MAC
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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@macjane , Are you on any antibiotics now?
No but on other meds given to me. The MAC was never discovered until 1 year ago after one misdiagnosis after another. I was told that I was a "liar" and that I had clearly was a heavy smoker. When two physicians tried to step in to speak with my PCP about the records and gross errors, he refused to even look at these. My medical records turned up "missing" when I changed to the University of Michigan. A request for records had been hand-delivered to my PCP's office months before.
I was on an antibiotic for a short period of time but had to get off it because of hearing loss. I, too, suffer from extreme fatigue. I prop myself up with various "tricks," they may or may not be helpful to others. I take vital reds daily...Grundy. This gives me an almost immediate boost so I can go out and run errands. I also, at my doctor's suggestion take an energy drink. I like Energy Shot from Whole Foods. It has some caffeine in it but it's a very small bottle, slips into your pocket or purse and I have it available in case I feel on the verge of collapsing while standing in line etc. I also, just recently, committed to drinking 8 glasses of water a day. I am surprised how much the water has helped. Fatigue is one of the primary symptoms of MAC so you have to come up with ways of getting through that work for you. With sympathy, Flib
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1 ReactionEight years ago my doctor and I agreed I would not do the antibiotics because I was not sick at all even though I had been diagnoised with Mac and Bronchiectasis. I had five good years of living my life, traveling etc. Since, I do feel sick; tired, short of breath, unable to make plans and follow through because I'm having a bad day. I do not regret my decision. I treasure those years of still feeling healthy. I am not on any antibiotics now as I was losing hearing as a result of them. My life is a daily challenge but I've got a routine that works for me. You will find that some people take the meds and come out doing fine and that others are miserable. There is no one answer and ultimately, the decision is yours. I have not had one doctor making it for me, and that's after seeing quite a few. I think age can be factored into the decision. Good luck.
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1 ReactionNo
What info for me. I got so much from your info.
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1 Reaction@flib Got to be a little careful about sticking to 8 glasses of water everyday for long term. There is no consensus in the medical community as to the benefit of drinking 8 glasses a day. Besides, vegetables and fruits and other foods provide plenty of water unless you have very little of them in your daily diet. Water is a good thing for the most part. But it can also be dangerous if we have too much of it. Here is an article from Huffington Post in which people are debating the pros and cons. https://www.huffingtonpost.com/2011/07/14/drinking-8-glasses-of-wat_n_899276.html
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1 ReactionThat was very well said!
You had me go to the article and it was quite interesting. One of my meds produces so much dry mouth and my PCP just told me that I might need to drink more water. I drink at least 8 glasses a day and my mouth is still dry. I had to really fight hard with 2 medicines clearly prescribing my tiredness as being depression. It made no sense and my Pulmonary doctor was angry that the MAC was clearly diagnosed as a psychological problem. After being diagnosed at 45 with Psychomotor Seizures, I had brain surgery with no follow-up care. Wrong diagnosis after another - wrong meds. Withdrawals were horrendous. I feel when I ask a question here, people try to answer or give you some support. There are so many people finally talking to me and I am going to approach my doctors with some straight questions about MAC and why it has been put on the back burner. Ironically my brother is a cardiologist who appears concerned about the diagnosis of MAC and my direction or lack of direction. He 's had some major medical himself so this group has become so important to me.
@macjane Jane that is horrible mistreatment! Never give up on finding GOOD healthcare.