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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@flib

@janovr Thank you. I was only ever on one antibiotic and got off it because of hearing loss. Both my doctors have suggested not doing the antibiotics and I'm glad I didn't. I'm nebulizing saline which is helpful. I've had the disease for ten years and it's beginning to show. I'm glad you are MAC free. That was a lot of weight in a short period of time. Golly. Flib

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Flib, I know we have had this conversation before; but can't you take an alternating monthly antibiotic like I did? Do an antibiotic for 10 days a month?

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@flib

@sueinmn Thank you, Sue. I'm not on antibiotics and, while I have very little appetite, I don't think I've reached aversion…yet. The dairy products you mention make sense but for two things. I have some dairy sensitivity which I try to ignore. But the dairy products produce a lot of sputum which causes difficult coughing fits. I've tried to eat small meals throughout the day but never thought about shoving something in my mouth every hour. In some ways easier to keep track . If I got 200 calories in 12 times a day, that would be 2400 which is better than what I am doing. And I could collapse some of this. It's a new way of thinking. Right now I am eating a banana. My goal for now is to gain five pounds and get back to hundred. I'll let you know how I'm doing. It does help to know others have had this experience. Sometimes I feel nutty with all the fatties around me tut tuting. Flib

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Flib, I wish you were my neighbor. If you were, I'd be bringing over all kinds of things to fatten you up!

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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!

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@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.

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Thanks so much for all the doable ideas!

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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.

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@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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