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Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Replies to "Hi, I’m new on this chat so please any help would be great. I also have..."

@tdrell I totally get you on this.

@windwalker ..I really had a good laugh this evening...want to share...talking on phone to chum in California...she has sooo much on plate...2nd husband has dementia and is going downhill fast...his family scattered all over country...she never had kids...
we are both in 70’s and we have talked in past re our rotting joints and lungs ...so midway thru talking I asked “let’s talk about how you are doing” her reply “my earlobes are doing just fine thank you”
We both had such a therapeutic chuckle from that comment...I think I will now use it also. Tdrell

Hey boomerexpert ! Thanks you I’ll get on that.

@boomerexpert I have been trying Ripple It is a pea based milk and not too bad. I can't be found everywhere. I still eat some Yogurt every day for the probiotics. I also take the 25million Probiotic Cap. Maybe I should try stopping the yogurt. (on the big 3)

@jkiemen I advise avoiding all dairy...creates inflammation and phlegm...there's nut and soy mild alternative products that are yummy

@america Weight loss is one of the signs of active mac or pseudomonas infection. I lost 26 lbs due to pseudomonas. That was in 2015. I started on tobramycin in the spring of 2016. The weight has been returning (+14 lbs). I am trying not to gain all of it back; I like where it is now. Weight gain or loss is a great indicator for your health. I hope you can get yourself to where you are gaining also.

Weight loss also occurs with severe-end of stage COPD. My husband is down to 114. He has COPD, broncoactasis and MAC. Sometimes it is difficult to know what is causing the symptoms.

@suzie2017 I think it depends on the individual. My mom was always a slender woman, but at het end stage of emphesyma & COPD she was stout due to enlarging lungs and years of being on prednisone. She was 58 yrs old when she passed. She had the added burden of Alpha-, a genetic disease. I am feeling for your husband; lung disease is no picnic.

@tdrell Your friend at least has a sense of humor along with her earlobes!