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 I feel for you! In 2015 I lost 40 lbs in 3 months. I changed doctors. He took me off the Big 3 and I have gained back 20 lbs. and of April, 2019, I am MAC free.
For me the treatment was worse than the disease!
Get a second opinion!
@flib That's so scary! Do you have trouble making yourself eat? Are you on treatment for the MAC?
I was thought to have MAC for about 3 years (fibronodular pattern with bronchiectasis on CT scan) but not treated initially because I just had a dry cough. I was seeing my pulmonologist every 6 months when I started to lose weight, slowly, a couple of pounds over 6 months (5’ 4”, started at 120). He told me I should work to gain weight, which I did, but I was down a few more pounds when I saw him next. Same talk about how important it is to keep your weight up. Then I had hemoptysis a month later and had developed a small cavity on CT scan. Bronchoscopy, positive cultures, and the big 3 followed in short order. By that time I had developed a serious anorexia and even an aversion to food. It was really hard to make myself eat. Fortunately, I only had nausea, cramping, and diarrhea for a day or 2 when I started the meds. Imodium helped, and I took them all on an empty stomach at bedtime. It took about a month of treating food like medicine before I began to be able to eat more normally and to stabilize my weight. I’m now regaining lost weight. My low was 105, about a month into treatment. I’m now at 6 month on meds, and my weight is back up to 113.
So, it seems to me the disease itself can cause weight loss, although clearly the meds can make some people lose weight as well. For me, the meds helped me turn it around. I focused on making sure I ate lots of protein, drank a smoothie made with kefir every day, and I take a multivitamin. I worked on getting lots of sleep and would nap very day when I needed it, and I think that may have helped. Also lucky to be retired and able to baby myself!
Please keep us posted!
@flib Are you on treatment?
Probiotics, good multivitamin/mineral, and lots of small high-protein snacks and meals. I have little/no appetite or hunger, even worse little thirst, and I have to force myself to eat & take beverages by the clock – something every hour. When I first had MAC,began losing weight & it accelerated with antibiotics (on them for a year now) until I was down 20 lb – which I didn't have to spare.
Now refrig is stocked with high-calorie cheeses, full-fat dairy products, protein bars and juice (never used to drink it – just water & coffee.) I put extra protein powder and milk or cream in smoothies, soup, chili, oatmeal… Never skip a meal even if I only manage a small portion. Instant breakfast & cream in my morning coffee. Many of these suggestions came from a friend constantly battling to maintain her weight because she cannot eat solid food. With this I have managed to just about maintain, even though I am now taking the antibiotics daily, and feeling very tired because of it. I think with the antibiotics disturbing the flora in the gut, there is also lack of absorption of nutrients, which makes the problem even worse.
If you feel you have slipped into anorexia, an true aversion to food/eating, some counselling may help.
@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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@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
I keep bottles of Ensure Plus in the refrigerator and several times a day I pour a small glassful and chug it down. So far, so good. This way I don’t get filled up and still add calories to my daily intake. I never would have dreamed I would be facing a weight challenge in this way! All of my life I had a challenge keeping my weight down!
A Jo Ann. I see my pulmonologist every three months. I was unable to continue the antibiotics because of hearing and some sight loss. Flib
I only wish I could lose weight, I have been on the "big 3" since March 1, 2019 and am gaining weight and not eating more. I have a lot of swelling too.
@sueinmn Great suggestions! I did those things too, and still do. I have put 14 lbs back on.
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