Losing weight due to MAC

Posted by Flib @flib, Jul 24, 2019

I understand that weight loss is part of the MAC experience. I keep losing. I am 5'7'' and weigh 95lbs down from 120 over the two past years. The loss seems to be accelerating. Quite worried and I welcome any suggestions or sharing. Flib

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@colleenyoung

@esssbeee I moved your message and question about how to stabilize weight with MAC to this existing message about weight loss. I did this so your question along with @sueinmn's fabulous response would also help others who are talking about this and keep all the suggestion in one place.

I agree with consulting a nutritionist. Esssbeee, in addition to weight loss, have you loss your appetite? Or is eating not a problem, it's just that the weight doesn't stay on?

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Eating is not a problem for me although I do forget to eat! Used to laugh when I heard people say this. No nausea. For the first time in my life I am not feeling guilty when I crave and eat pizza! I even indulge in a full strength beer while doing so! Still the weight continues to come off! Wish I could bottle this!

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@esssbeee

Eating is not a problem for me although I do forget to eat! Used to laugh when I heard people say this. No nausea. For the first time in my life I am not feeling guilty when I crave and eat pizza! I even indulge in a full strength beer while doing so! Still the weight continues to come off! Wish I could bottle this!

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No you don’t!!!

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@irene5

No you don’t!!!

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Ever since being diagnosed with bronchiectasis, keeping weight on is challenging. I have been very fortunate in not developing any long term infections to this point but my interest in eating comes and goes. I find myself forgetting to eat as their is occasionally no interest which I know is very bad for my overall health. @sueinmn has some wonderful ideas to help and I do try to force myself to eat, although keeping food with me has to be more of a priority. To get sick without some weight as a cushion is concerning.

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@esssbeee

<p>All my life I have fought weight gain. Now, I am losing weight without wanting to do so. Recently diagnosed with MAC. Waiting to be seen at NJH before starting any treatment. Only symptoms are continuing weight loss, extreme fatigue and cough, controlled by airway clearance with 3% hypertonic saline via nebulizer. Am eating everything I want to eat. Still losing weight! Any ideas to help stabilize weight? Thanks!</p>

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@esssbeee Hi there. I too lost weight rapidly at the height of my infection. I went from 142 lbs to 116. I was losing like 4 lbs aweek. I thought surely I must have cancer. Once the antibiotics started kicking in and killed the infection; my weight came back on. I am now at 130 lbs and do not wish to add more. I still eat food with fattening ingredients to maintain my weight. I move a lot so I am not likely to become overweight. I know it is hard to eat when you have no appetite whatsoever and nothing tastes good. You have to be creative and make what food you can eat really count. Rice and avocados are very high in calories. Cucumbers and celery are good inflammation killers. In fact, celery juice is now a big thing for treating inflammation (which is the root of most diseases). Keep me posted on how you are doing and if you come across some good high calorie recipes.

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Thank you for your positive comments and suggestions!

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Last year (2022) I was diagnosed with bronchiectasis and with MAC. I was extremely reluctant to begin the popularly recommended Big 3 antibiotic regimen because having practiced Yoga for about 50 years and a (mostly) healthy lifestyle proponent for many years, I did not want to go down the drug path. After researching extensively talking to several doctors I trusted, I was convinced that I must do the Big 3 or face sure destruction of my lungs and very sad old age. After one false start with complications for a few weeks, I resumed the Big 3 only three weeks ago. I'm taking probiotics, multiple vitamins, walking a fast mile 2 or 3 times a week, eating voraciously, but also losing weight - and muscle scarily. From a about 124 lbs. to now 115, I don't know what to do. But in my research I've found some promising studies into Kampo medicine's effectiveness in MAC. Has anyone else had experience or knowledge of this?

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@byurose

Last year (2022) I was diagnosed with bronchiectasis and with MAC. I was extremely reluctant to begin the popularly recommended Big 3 antibiotic regimen because having practiced Yoga for about 50 years and a (mostly) healthy lifestyle proponent for many years, I did not want to go down the drug path. After researching extensively talking to several doctors I trusted, I was convinced that I must do the Big 3 or face sure destruction of my lungs and very sad old age. After one false start with complications for a few weeks, I resumed the Big 3 only three weeks ago. I'm taking probiotics, multiple vitamins, walking a fast mile 2 or 3 times a week, eating voraciously, but also losing weight - and muscle scarily. From a about 124 lbs. to now 115, I don't know what to do. But in my research I've found some promising studies into Kampo medicine's effectiveness in MAC. Has anyone else had experience or knowledge of this?

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I went on an "hourly regimen" - one high value, high calorie food per waking hour to maintain during the Big 3. One once of cheese or egg, 4-6 oz of fruit/veg/protein smoothie, 1/4c tree nut or seeds, 100 cal cheese or yogurt, etc every waking hour. It stopped my loss. This wa in addition to 2-3 high nutrient value but small. Deals per day. Lots of hummus, beans, chicken, dairy, eggs...

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@sueinmn

I went on an "hourly regimen" - one high value, high calorie food per waking hour to maintain during the Big 3. One once of cheese or egg, 4-6 oz of fruit/veg/protein smoothie, 1/4c tree nut or seeds, 100 cal cheese or yogurt, etc every waking hour. It stopped my loss. This wa in addition to 2-3 high nutrient value but small. Deals per day. Lots of hummus, beans, chicken, dairy, eggs...

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@sueinmn
Thank you for your good eating suggestions. You say this program stopped your weight loss, but did you regain any of the weight? Have you completed the Big 3 regimen, and do you still maintain your hourly eating plan?

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@byurose

@sueinmn
Thank you for your good eating suggestions. You say this program stopped your weight loss, but did you regain any of the weight? Have you completed the Big 3 regimen, and do you still maintain your hourly eating plan?

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I went from a 5'11" slim 147 to 128 pounds, started treatment and the "pot roast diet" and gained over 40 pounds over 3 years. Then a fungal infection set in and I lost 20 again but since treatment I have gained over 10 pounds back.

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@byurose

@sueinmn
Thank you for your good eating suggestions. You say this program stopped your weight loss, but did you regain any of the weight? Have you completed the Big 3 regimen, and do you still maintain your hourly eating plan?

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I began losing weight before the antiobiotics, while I was quite ill with MAC & pseudomonas, coughing non-stop and have a fever for over a year. The loss continued the first six month of treatment, and my weight stabilized for about a year. Then the daily regimen of meds "took over my life" and we stopped the antibiotics; I didn't begin to regain the weight until a few months later. Then it took over 2 years to regain most of what I had lost - I am happy with my current weight and most of my clothes fit again.
Sue

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