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Losing weight due to MAC
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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Hi I am curious after reading your post. You said you have had MAC 3 times. How did you get rid of it and what did you do to be able to say your now MAC free? Your story gives hope and is very interesting.
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1 Reactionthanks for your reply bdr...
why do you suppose the mac returned? My dr...dr swenson in atlanta, started me on ethambutol and azithromycin........I wonder what makes the Mac come back once it's successfully treated?
How do you induce sputum for culture if you do not produce any. I use 2 pugs of Al uteri’s next 3% saline solution nabulized , next do a set of aerobika exhalations and then huffs and coughs but there is nothing I produce. Now I got the set from National Jewish to send a sputum sample but I am lost at how to get anything from my lungs. May be somebody had the same problem and has a solution
I am sorry for the misspelling- two puffs of Albuterol
Dear Flib,
I strongly recommend you see a nutritionist who specializes in lung disease. Michelle MacDonald is the nutrition supervisor at National Jewish Health. She also has a consulting business.
The link below is to a talk she did in April for the NTM patient conference at NJH.
We all need to think of food as medicine. Especially people like me who have an infection or a history of infection, we need to strengthen our bodies to be their strongest. Fortunately for those who have a poor appetite there are options for putting on weight.
If you want her contact information, please message me directly.
Best,
Linda Esposito
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1 ReactionI was losing weight and my oncologist prescribed 5 ml of Megace. One of the side effects is weight gain.
Works a little bit.
Harry
Me too.
I have MAC and am wondering if I should go on the Big Three or try immunotherapy instead. I'm very thin and am worried about weight loss if I go on the drugs. Do they really work to get rid of MAC? I haven't heard many success stories. Thanks for any input. @debinCali
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1 ReactionHi Deb, Welco e to our MAC support group - there is so much information here, it can be hard to know where to begin. Let me give you a few links to follow that might be helpful to you
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
Can you explain what you mean by immunotherapy? At this time, there is no proven or approved immune treatment for mycobacteria infections.
IF you infection is not severe, there are more conservative treatments you can try such as airway clearance with 7% saline .
How long ago was your infection diagnosed?
Sue
Hello Deborah
I lost weight, appetite due to Be and MAC1
Dietician advised Ensure, made by Abbott.
I have put in a few pounds have more energy , but some fatigue persists in the afternoon.
Trying to avoid the big 3 with 7% saline neb and chest clearance twice a day. Another Ct Scan soon so we’ll see.
If I have to I guess I’ll have to accept the big 3 .it works for some people. In the meantime I believe other drugs are on trial.
Best wishes
SP