loosing weight

Posted by lilianna @lilianna, Dec 6, 2023

hello to everyone who dealt with it. I have MAC, bronchiectasis and recently was diagnosed with pseudomonas a. I use to maintain my 102-103 lb weight but recently I started loosing pounds and now I am 99 lb. I eat although without appetite and am frightened to see that there are less pounds. What did you do/ or what do you do when you deal with the same problem? When I eat even small amount I feel full and not hungry at all. I also constantly worry so probably this does not help either. Please share your ideas.

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Thank you all for sharing. I already bought ensure plus (350calories!!) and Orgain protein shakes (20 g) and will contact a nutritionist regarding meals (I am not entitled to a nutritionist through my insurance- only for renal disease) but I try to eat more and eat between meals (very hard because I am always full). I hope slowly I will get up to 102lb (my goal).

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@lilianna

Thank you all for sharing. I already bought ensure plus (350calories!!) and Orgain protein shakes (20 g) and will contact a nutritionist regarding meals (I am not entitled to a nutritionist through my insurance- only for renal disease) but I try to eat more and eat between meals (very hard because I am always full). I hope slowly I will get up to 102lb (my goal).

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To counter the full feeling while on and shortly after the antibiotics, I became a "nibbler" - deliberately eating a small high-value bit of food every one-two hours - I had cut cubes of cheese (1 oz portions) and knew the mearsure of peanuts, cashews or roasted pumpkin seeds to equal about 150 calories. It took 2 years, but I did regain my weight. Even 4 ears later, I have to stay vigilant because I have lost the ability to "feel" hunger - I only know when I get lightheaded or get a bad headache. I will notice (like just now!) - Oh it's 4:30 and I haven't had a bite since breakfast.
Sue

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I originally lost 20lbs from my slim frame. I got to throw "healthy" foods out the window and eat everything I can as often as I can from pot roast to ice cream. I regained my weight plus 20 lbs more. My BMI is a perfect 24. Unfortunately, my wife also gained 20.

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I have diabetes, high cholesterol with a BMI 19. After my height dropped an inch due to spinal disc degradation my BMI became 20. Since I had MAC my body weight decreased to 107 pounds and little lower . I can’t eat small amounts of snacks in between of meals, because that would increase my insulin resistance. My A1C increases so I keep 3 meals a day, but each meal I eat as much as possible a couple more bites beyond full. I no longer worry about my high cholesterol. I eat two eggs at least a day and I eat meat with the fat and I eat 1/2 piece of bread each meal with butter or olive oil and sometimes I drink a tablespoon of olive oil at morning. During meal time I drink milk instead of water. My LDL use to be 200+- To make my Cardiologist and myself feel more comfortable I take his prescription Repatha 140mg injections every 2 weeks. I walk after each meal and I do core muscle exercises for my osteoporosis and my sciatic pain. After all that struggle I am able to keep my body weight 107-109 pounds, at least I did not lose weight but I can’t gain any. My A1C was 6.2. Thats about all I can do and I have to say to myself what ever is going to happen let it happen .

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Hi Liliana, the mechanism(s) for why MAC and other NTMs cause weight loss is not yet known. In my case (Bronchiectasis and MAC x 3) I experienced weight loss only the first time, second and third times not. I now have M. Abscessus colonization and insidious weight loss with little to no appetite/full feeling/chronic diarrhea and other GI symptoms. GI testing revealed SIBO and malabsorption of fat, which could be related to the NTM or not. Treatment for SIBO completely resolved the diarrhea and greatly reduced other GI symptoms, but that along with digestive enzyme supplementation for the malabsorption has not, thus far, helped me gain weight. I am working with a nutritionist and eat nutritionally dense food. Protein smoothies are essential when I feel fatigued. So in addition to the excellent advice by the previous commenters, I would add testing for malabsorption and maldigestion to eliminate those as possible factors. Best of luck on your journey with NTM.

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@roisin11

Hi Liliana, the mechanism(s) for why MAC and other NTMs cause weight loss is not yet known. In my case (Bronchiectasis and MAC x 3) I experienced weight loss only the first time, second and third times not. I now have M. Abscessus colonization and insidious weight loss with little to no appetite/full feeling/chronic diarrhea and other GI symptoms. GI testing revealed SIBO and malabsorption of fat, which could be related to the NTM or not. Treatment for SIBO completely resolved the diarrhea and greatly reduced other GI symptoms, but that along with digestive enzyme supplementation for the malabsorption has not, thus far, helped me gain weight. I am working with a nutritionist and eat nutritionally dense food. Protein smoothies are essential when I feel fatigued. So in addition to the excellent advice by the previous commenters, I would add testing for malabsorption and maldigestion to eliminate those as possible factors. Best of luck on your journey with NTM.

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How did they test for SIBO?

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@sweethighland

How did they test for SIBO?

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The standard SIBO test is a breath test, and I did that through a consultation with functional medicine. My health insurance covered the cost of the consult, but not the cost of the test or the treatment protocol.

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I lost 7 kg and was very much like yourself. I had ensure protein drinks prescribed by Dr as they have minerals as well in them. The dietician put me on a balanced protein and carb diet to help build muscel and energy strength. It has taken me 7 months to gain the weight and still have to top up with protein drinks when weight slips. I hope this helps you

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@rstel7272

I originally lost 20lbs from my slim frame. I got to throw "healthy" foods out the window and eat everything I can as often as I can from pot roast to ice cream. I regained my weight plus 20 lbs more. My BMI is a perfect 24. Unfortunately, my wife also gained 20.

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I’m going into my third month and haven’t lost any weight. I could actually benefits from some weight loss. How far into the treatment did you start losing the weight?

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@coder

I’m going into my third month and haven’t lost any weight. I could actually benefits from some weight loss. How far into the treatment did you start losing the weight?

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Like most of us with NTM's, I struggle to keep weight on.

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