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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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@src3acs Many of us with the same diseases didn't feel sick when we were diagnosed. My diagnosis came when I coughed up large amount of blood out of the blue 3+ years ago. I had just played tennis for 1.5 hours that afternoon. I felt something in my throat when I got home and thought it was just some phlegm that could be coughed out. When it came out, it was scarlet red. I spent the night in the ER. Doctors and nurses were all gowned up thinking I had TB. The entire time I did not feel sick at all except the blood kept coming up and the amount was increasing. The county sent a infectious disease nurse to my house immediately after I was released from the ER and collected sputum samples from me. Three sputum samples all came back negative for TB. When I visited the pulmonary doctor, he ordered another sputum test for MAC, which came back positive. I went back to playing tennis two days later. No more blood and haven't coughed up any since. I have not felt sick. Not for a minute. Everybody here has a different story to tell as to how their diseases were discovered/diagnosed. Some of us have other lung-related illnesses which may have caused them to not feel well. Some have fatigue and shortness of breath like what you are experiencing. MAC infection is really a mysterious disease in my opinion. There are no uniform symptoms. Like Terri said, we just need to equip ourselves with amble knowledge and seek multiple opinions from different sources if necessary. It's not going to be an easy road. The payoff is in our persistence. Very frustrating, yes. But I do believe the right doctor knows the answer to our situations. The trick is how to find them.
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3 ReactionsSo sorry! Words can not express the frustration of being treated and then having it come back! Quality of life appears to be out of reach for many of us. God willing a real cure will be found soon. We all wait with anticipation for those “golden years” to do so many things and then get slammed with MAC. Just try to keep putting one foot in front of the other, and try to eat nutritious foods. (which is often difficult if we are nauseous). You aren’t alone in this! Hugs.
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2 ReactionsMAC 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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1 Reaction@src3acs I diddnt feel sick either, just the fatigue and shortness of breath, but the CT showed a different story so I was put on the meds. Hope all goes well for you.
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2 ReactionsI have been doing a lot of reading today. From what I can tell bronchiectasis seems to cause a lot of the fatigue.
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1 Reaction@src3acs, It really does. I never made it out of my pj's today. Have never made it off of the sofa today. I hate days like today.......
@src3acs, Funny, I am from Va. also. Since you aqre from No.Va. Have you considered NIH?
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1 Reaction@ling123, I feel like you are doing as well as you are due to the fact that you have played tennis for years. Your lungs have got to be very conditioned. That may have been your saving grace.
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1 Reaction@ling123, True that, Ling! That is why it is important to do your saline inhalation twice a day! It is just good lung hygien!
@dmarks, I hate to say this, but the only surgeries I hear of ONLY come from Denver and Dr. Mitchell. I am seeing a pattern. Not only am I suspect, but the condition seems to come back on all patients who undergo this surgery.