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I think @sueinmn has it right. If one is losing weight, one has to be vigilant about eating. It cannot be left to appetite. One needs to assess their daily calorie needs (there are many online resources for this, if in doubt seek out a nutritionist) and then divide those calories up in meal sizes/number/timing one can tolerate, and then make sure you eat it on schedule each time/day. Hearing Sue describe her hourly snack schedule really highlights the challenge and nuance, she could only eat so much at a setting so she snacked each hour. But that math, and the discipline it takes to stick it, is key. I do not have a weight loss issue, and purposely put on 8 lbs after diagnosis to get to a BMI of 20 (which like Sue I don’t love the extra weight but have a current MAC infection and will be starting treatment soon so wanted that cushion). But low weight is very common in this patient population and if there is one thing I would stress is DO NOT WAIT TO ADDRESS WEIGHT LOSS. It is more and more challenging to address the more weight you lose. And with MAC/NTM specifically, having a BMI below 18.5 is associated with a poorer prognosis. I think in the early stages weight loss goes unnoticed or is downplayed, in part because we have all been raised in this crazy society where one cannot be too thin (especially women). But the truth is, one can be too thin and many in this patient population fall into that group. We must be VIGILANT about our weight. Track it. Preferably weekly so you catch trends early. And no matter what, EAT. Whether you want to or not, whether you have to eat in small amounts hourly, whatever it takes. We all know what a resource Sue is on all things BE/MAC, and on this issue it is no different. Be Sue, figure out what you need to do to keep weight, gain weight, and then do it. Please. ❤️🙏

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Replies to "I think @sueinmn has it right. If one is losing weight, one has to be vigilant..."

Thank you so much! I'm afraid I've gone too far. I'm losing faster and faster. What I haven't done is assess my daily calorie needs, divide those calories in meal sizes, timing etc and track!!!
I'm working on that right now. I am so grateful for your input!!!
Diane