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

Windwalker, if possible can you tell me what antibiotics you were on. If you can't, I understand.

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@bibes

Windwalker, if possible can you tell me what antibiotics you were on. If you can't, I understand.

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@bibes Click on my picture and my medication regimen will pop up for you to read. I put it there because people ask me every day about it.

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@windwalker

@bibes Click on my picture and my medication regimen will pop up for you to read. I put it there because people ask me every day about it.

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Thank you so much. Bibes

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@esssbeee

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!

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@esssbeee This is a typical side effect of MAC and bronchiectasis. There is no single cause everyone can agree on, but it may be that the infection itself is a) causing your body to burn extra calories trying to heal or b) causing malabsorption of nutrients.
Either way, I understand your concern. I have the same experience, as well as being on the Big 3 antibiotics for over a year. I have lost weight to the point that I nearly look anorexic (15% loss from my previous weight), and I'm not happy about it.
Here are a few of my strategies, which have allowed me to maintain (but not regain) weight for the past couple months
Probiotic to help gut (due to antibiotics)
Force-feeding myself – an high protein or high calorie snack every 1-2 hours whether or not I'm hungry – 1 oz cheese or meat cubes, 1/2 of a protein drink, 1/2-whole protein/snack bar, banana or apple, yogurt, even ice cream. I stop after dinner due to needing to take my meds on an empty stomach.
Full-fat dairy products (I don't have a cholesterol issue)
Carnation Instant Breakfast in my morning coffee
Smoothie – yogurt, multiple fruits, protein-vegetable powder, carrot & avocado chunks, fruit or veg juice – I make 2 liters at a time, store in frig, keeps about 4 days. I can manage to drink this even when my stomach refuses solid food.
Ditch salads because they fill me up too much, when I do eat them I load with meat, cheese, eggs & full-fat dressing.
Add butter or sauce to all veggies and potatoes.
When you go to NJH, ask for a consult with a nutritionist, especially if they start you on antibiotics. I wish I had that option at my clinic when I started.

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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!

REPLY
@esssbeee

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!

Jump to this post

@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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@sueinmn

@esssbeee This is a typical side effect of MAC and bronchiectasis. There is no single cause everyone can agree on, but it may be that the infection itself is a) causing your body to burn extra calories trying to heal or b) causing malabsorption of nutrients.
Either way, I understand your concern. I have the same experience, as well as being on the Big 3 antibiotics for over a year. I have lost weight to the point that I nearly look anorexic (15% loss from my previous weight), and I'm not happy about it.
Here are a few of my strategies, which have allowed me to maintain (but not regain) weight for the past couple months
Probiotic to help gut (due to antibiotics)
Force-feeding myself – an high protein or high calorie snack every 1-2 hours whether or not I'm hungry – 1 oz cheese or meat cubes, 1/2 of a protein drink, 1/2-whole protein/snack bar, banana or apple, yogurt, even ice cream. I stop after dinner due to needing to take my meds on an empty stomach.
Full-fat dairy products (I don't have a cholesterol issue)
Carnation Instant Breakfast in my morning coffee
Smoothie – yogurt, multiple fruits, protein-vegetable powder, carrot & avocado chunks, fruit or veg juice – I make 2 liters at a time, store in frig, keeps about 4 days. I can manage to drink this even when my stomach refuses solid food.
Ditch salads because they fill me up too much, when I do eat them I load with meat, cheese, eggs & full-fat dressing.
Add butter or sauce to all veggies and potatoes.
When you go to NJH, ask for a consult with a nutritionist, especially if they start you on antibiotics. I wish I had that option at my clinic when I started.

Jump to this post

Thanks so much for all the doable ideas!

REPLY
@sueinmn

@esssbeee This is a typical side effect of MAC and bronchiectasis. There is no single cause everyone can agree on, but it may be that the infection itself is a) causing your body to burn extra calories trying to heal or b) causing malabsorption of nutrients.
Either way, I understand your concern. I have the same experience, as well as being on the Big 3 antibiotics for over a year. I have lost weight to the point that I nearly look anorexic (15% loss from my previous weight), and I'm not happy about it.
Here are a few of my strategies, which have allowed me to maintain (but not regain) weight for the past couple months
Probiotic to help gut (due to antibiotics)
Force-feeding myself – an high protein or high calorie snack every 1-2 hours whether or not I'm hungry – 1 oz cheese or meat cubes, 1/2 of a protein drink, 1/2-whole protein/snack bar, banana or apple, yogurt, even ice cream. I stop after dinner due to needing to take my meds on an empty stomach.
Full-fat dairy products (I don't have a cholesterol issue)
Carnation Instant Breakfast in my morning coffee
Smoothie – yogurt, multiple fruits, protein-vegetable powder, carrot & avocado chunks, fruit or veg juice – I make 2 liters at a time, store in frig, keeps about 4 days. I can manage to drink this even when my stomach refuses solid food.
Ditch salads because they fill me up too much, when I do eat them I load with meat, cheese, eggs & full-fat dressing.
Add butter or sauce to all veggies and potatoes.
When you go to NJH, ask for a consult with a nutritionist, especially if they start you on antibiotics. I wish I had that option at my clinic when I started.

Jump to this post

@esssbeee That is excellent advice from @sueinmn. I lose weight like it’s my job. It is horrible. Eating those kinds of foods every few hours is key. Making yourself consume them when you don’t want to eat is crucial. My ID doctor has me drinking Garden of Life meal replacement- only it is in addition to a meal. It is scary and concerning to lose weight when you aren’t trying. Good luck to you. (Irene5)

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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?

Jump to this post

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!

Jump to this post

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

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!

Jump to this post

@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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