1. < MAC & Bronchiectasis

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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irenea8 | @irenea8 | Dec 12, 2023
In reply to @roisin11 "Hi Liliana, the mechanism(s) for why MAC and other NTMs cause weight loss is not yet..." + (show)
@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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what was the treatment for SIBO??

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roisin11 | @roisin11 | Dec 12, 2023

Hi irenea8,

I'm not well read on this. What I have read and had confirmed by my functional medicine doc is that there are two categories of treatment: A two-week antibiotic called Xifaxin (Rifaximin, very expensive in the US), and herbal protocols which vary in duration depending on the severity of the overgrowth. I'm doing a three-month herbal protocol that includes multiple herbs, probiotics, gut-healing supplements, digestive enzymes and other supplements to address deficiencies. If that goes well, then another round of different probiotics and treatment for yeast. It's a process!

I'm feeling a lot better and able to resume more full days of being active and engaged and including exercise. It's just my opinion but I think that the herbal process is more likely to succeed in the long term due to allowing time for the gut to heal and probiotics and diet changes to do their thing. I recommend a functional medicine MD (or perhaps integrative medicine) to explore this, my gastroenterologist is not knowledgeable and possibly not fully on board with this diagnosis. I hope that's helpful, Roisin

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1 reply
lilianna | @lilianna | Dec 12, 2023

Hi roisin11,
Is the herbal protocol covered by Medicare, I wonder

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suzyqueue | @suzyqueue | Dec 13, 2023

I drink Boost Plus Shakes that have like 360 calories in them (found in grocery stores/Walgreens etc). Boost also makes a shake that is called "Very High Calorie" with 530 calories in each. I find those on Amazon and the Nestle website. These drinks are super convenient, taste good and are actually small.

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damcipro | @damcipro | Dec 14, 2023
In reply to @roisin11 "Hi irenea8, I'm not well read on this. What I have read and had confirmed by..." + (show)
@roisin11

Hi irenea8,

I'm not well read on this. What I have read and had confirmed by my functional medicine doc is that there are two categories of treatment: A two-week antibiotic called Xifaxin (Rifaximin, very expensive in the US), and herbal protocols which vary in duration depending on the severity of the overgrowth. I'm doing a three-month herbal protocol that includes multiple herbs, probiotics, gut-healing supplements, digestive enzymes and other supplements to address deficiencies. If that goes well, then another round of different probiotics and treatment for yeast. It's a process!

I'm feeling a lot better and able to resume more full days of being active and engaged and including exercise. It's just my opinion but I think that the herbal process is more likely to succeed in the long term due to allowing time for the gut to heal and probiotics and diet changes to do their thing. I recommend a functional medicine MD (or perhaps integrative medicine) to explore this, my gastroenterologist is not knowledgeable and possibly not fully on board with this diagnosis. I hope that's helpful, Roisin

Jump to this post

Hi roisin11, could you give us more details of the functional medicine docs protocol what herbs/enzymes and supplements you use. I have destroyed gut and can’t get help of docs that poisoned me and don’t have funds for f/d doc. Any info would be much appreciated.
Thanks

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pacathy | @pacathy | Dec 14, 2023

I have gradual, steady weight loss, but am still in normal BMI range (it’s almost a 30 lb range).
I’ve been trying to do what they taught me years ago when my late husband had a stem cell transplant and developed a type of graft vs host and couldn’t eat. They told us no calorie free liquids (no water, but juice, milk with cream, milkshakes or coffee with cream, etc). They recommended calorie dense snacks and food like raisins, nuts, etc. I used butter on nearly everything. He was also on Ensure Plus, but I just can’t drink those.

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