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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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@lisanova if the nodules has decrease it is a very good sign. It means it is not tumor and also the only way for sure to have a positive effective MAC diagnostic is by getting a bronchoscopy. It will clean your lungs and it will also confirm by the lab if
you have a MAC. The big 3 is only for MAC and it wasn’t proven effective neither so you want want to try CLEAR LUNG when you feel congested or out of breath a bit more than usual to clear the infection so it won’t turn into pneumonia. It was the same for
me but my lung dr followed the result by another scan 3 months later so the nodules had decrease then. Then the postpone the CTCan 6 months later. It look the same micro-nodules and bronchiectasis comparable to the last one. I had no symptoms much coughing
once and a while but nothing to think it was abnormal. The bronchiectasis happened after a big pneumonia in 2009 and unfortunately it had to dilate the bronchial (bronchiectasis) at the end of the bronchial what is called tree-buds and this is where the infection
shows nodules. They followed me for 3 to 4 years and my lung DR suggested a bronchoscopy to clean the lungs not because I had symptoms. Then when the lab result came back it confirmed a MAC in 2014. I was referred to an infection Dr. For the MAC. Because
I didn’t had to much symptoms he explained to me that the treatment was the BIG 3 and it had amore secondary effects than effective healing so he suggested to keep a follow up every year with CTSCAN instead so I have done that until last year with that Dr
and he said you are doing so well that I don’t need to see you anymore. If it gets worst your pulmonary Dr will send me again. I have a ctscan every year after. I will have one every two years if I keep the way I am now. The dilation of the tree bud will always
show micro-nodules from what I understood on the scan so I am not worrying about it. I am glad that I had prevention Dr. They don’t give a pill at the first sign. The last bronchoscopy last year 2017 confirm no MAC. Sputum is not an accurate test. When
I had the MAC the sputum confirmed no MAC and my dr. Said sputum is not accurate.
It is so confusing having so many opinions from doctors. I am glad mine are on the prevention side. My dr said it is worst with people who has COPD or any other lung problems. Best to you Lisa ! Keep taking good care of yourself!
Why women? It is a good question. I don’t think they have the answer to it! Nick
@lisanova@windwalker my doctor said to me last week that bronchiectasis are seen on people who are smokers or have had many pneumonia when they were young or older. He give ma a prescriptions of Havelox (antibiotic) (spare) always with me in case I start
a cold and I feel some congestion, he said do not wait start your antibiotic for 10 days to make sure you don’t get a pneumonia. We can also get bronchiectasis from aspiration of liquid or acid reflux in our lungs. Why women I think our system isn’t as strong
as a men so I am ordering my reincarnation lol just joking! Nick
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1 Reaction@windwalker are you sure you want to do the botox for your TMJ??
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1 Reaction@lisanova I often think if some famous person were to get this and it got allot of publicity, then we might see more being done about this or if more Men were to get this, would we see more being done. How can we get our voices heard that we need more research, quicker approval for the Nitric Oxide trials etc
@jkiemen One way to get our voices heard is to register on http://www.ntminfo.org I am registered. You remain unknown unless you make yourself known. All of us should be registered there. That way, grants for more resrarch get given, but the gov't and other grantors want to see real numbers. They need to see that it is a growing number of people.
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2 ReactionsWould Cleveland Clinic be another place for good second opinion? 3 hours away?
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1 ReactionTerri, I Sleep sometimes 45 minutes a night, if that. Does anyone get horrific nightmares that hold on 5 or 6 times a night?
My Vitamin D level is very low but nothing done to stabilize any of this. Does anyone have very irregular bowel movements? Or gross headaches in morning?
Good morning - try eating Activia. It works for me. I eat one every morning, and it helps with digestion. When I was on the Big 3, my stomach hurt all the time. Once I started eating Activia, my stomach problems went away. Good luck to you. Also, I don't suffer from headaches.....
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2 Reactions@macjane I would think Cleveland Clinic would be a good place to go. They have an excellent reputation.
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