Mayo Clinic Connect
I have bronchiectasis and NTM. I also have GERD. I have been on the "big 3" for six months. I have no appetite and am losing weight. Anybody else have this problem, and if so what are you doing about it? Is it caused by the antibiotics?
Sure, I add Carnation Instant Breakfast drink (the powered kind). I use one packet per cup of coffee. I always get chocolate but there is also vanilla. (Vanilla does not have as strong of a flavor as the chocolate.) With each packet you get 130 calories, 5 mg of protein and other nutrients. There are probably other powdered protein powders that you could use as well, but this one is easy to find at grocery stores, so I always get it. It was recommended by my doctor as a way to keep my weight up.
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@hopeful33250 Thanks! That's easy enough!
Liked by Teresa, Volunteer Mentor
Thank for the Instant Breakfast suggestion! Morning is the worst time for forcing myself to eat, but if I add that to my coffee/cream, it could work.
@erawl Hi there. Please read through past posts on what others have done to combat weight loss. There are all kinds of ways to bump up calorie intake. My weight cameback on after I tested negative for all lung infection. Pseudomonas was the culprit of my weight loss. This is a common bug that we, with mac and bronchiectasis contract. Be sure to get regular sputem tests for that too.
@sueinmn I hope it does work for you! Atkins also makes a liquid beverage shake that I sometimes use in the morning. It is low in carbs and sugars but high in protein. If I'm not feeling hungry it is often easier to drink a meal rather than eat a meal.
Will you let me know how you are doing?
I have a question that perhaps you can help me with. I had a sputum test last fall and two of the three tests came back with positive results and my doctor (whom I like and respect a good deal) described the cultures as some kind of bacteria that acts as a colonizer and is not a mycobacterium that requires antibiotics. He asked me to return to twice daily respiratory therapy (which I’m doing) but I don’t really understand the difference between all the terms that get discussed on this forum. I guess what I’m asking do you think a wait and see approach with what I’m doing is best or do you think I should pursue further? Although I wouldn’t really know what to pursue. I am not actively sick -I’m working- but have a good deal of fatigue. Thx for listening to this ramble😜
Liked by Terri Martin, Volunteer Mentor
Hi migizii, do you see a pulmonologist who is experienced in treating bronchiectasis? What is the colonizing bacteria, and what can you learn about it? If you are coughing up sputum after respiratory therapy, is it clear or yellow/green? Have you had a CT scan to show if there is evidence of infectious damage to your lungs? I would be hesitant to "wait and see" without complete testing and evaluation by a specialist. The waiting advised by my family practitioner left me very ill, weak and fatigued before treatment commenced. My pulmonologist explained that damage from bronchiectasis leaves one susceptible to infection by bugs that normal lungs would be able to overcome, thus he may treat me now, but would not do so for a patient with normal lungs/lung function.
I see a pulmonologist at Mayo in Rochester, MN. I had a CT scan prior to the sputum test and that’s why he ordered the tests. I do cough up sputum (it is usually clear, murky, or slightly blood stroked, but not yellow or green) after respiratory therapy. Information is limited on the internet but here’s what my doctor told me: 2 of the 3 cultures showed mycobacterial current-gordornia polyisoprenivorans, which he called and does not cause disease unless there is an immunodeficiency (which I do not have)……..I am stable as far as no illness is concerned and I am due to see him again in 6 months. I do experience ongoing fatigue and some chest pain (this is minimal). What do you think?
migizii – I am not a doctor, but live my life surrounded by medical professionals, and I know there are MANY infections which are not treated unless you are immuno-compromised. The folks at Mayo are among the best in the field, my brother sees them, and trusts them implicitly. If you feel like you are getting good care, go with it! Also, the purpose of the respiratory therapy is to bring up the mucus, so sounds like it's working. Just be sure the doc explains when you should be in contact if your condition changes. For example, in September, my doc said he would see me in April, but just recently his nurse said he wants to see me in February instead.
Liked by Teresa, Volunteer Mentor, Terri Martin, Volunteer Mentor
Thx so much for listening and helping me sort all this out. I know my scheduled next time to see my doctor, but he really didn’t explain under what circumstances may require an earlier appointment. That might be a good question to send to his office, although as long as I don’t get any infections, my guess is we will stay the course……battling fatigue seems to be a norm and my weight is holding steady.
I was on the big three for three yrs. until couple months ago. The antibiotics affect appetite but the illness itself does too. One thing that will help to put weight on is a product called Naturade Gain Weight. It’s a powder formula. I mix it with rice milk.
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