1. < MAC & Bronchiectasis

Losing weight due to MAC

Posted by Flib @flib, Jul 24, 2019

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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melinda561 | @melinda561 | Jul 31, 2023
In reply to @rstel7272 "I went from a 5'11" slim 147 to 128 pounds, started treatment and the "pot roast..." + (show)
@rstel7272

I went from a 5'11" slim 147 to 128 pounds, started treatment and the "pot roast diet" and gained over 40 pounds over 3 years. Then a fungal infection set in and I lost 20 again but since treatment I have gained over 10 pounds back.

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What is the pot roast diet? Thanks. Thanks

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1 reply
byurose | @byurose | Jul 31, 2023
In reply to @sueinmn "I began losing weight before the antiobiotics, while I was quite ill with MAC & pseudomonas,..." + (show)
@sueinmn

I began losing weight before the antiobiotics, while I was quite ill with MAC & pseudomonas, coughing non-stop and have a fever for over a year. The loss continued the first six month of treatment, and my weight stabilized for about a year. Then the daily regimen of meds "took over my life" and we stopped the antibiotics; I didn't begin to regain the weight until a few months later. Then it took over 2 years to regain most of what I had lost - I am happy with my current weight and most of my clothes fit again.
Sue

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@sueinmn Thank you Sue. What an ordeal you had. Can you tell me what you meant by the daily regimen of meds "took over my life" and we stopped the antibiotics? What was happening then? And was the MAC gone at that time? Has it returned?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 31, 2023
In reply to @byurose "@sueinmn Thank you Sue. What an ordeal you had. Can you tell me what you meant..." + (show)
@byurose

@sueinmn Thank you Sue. What an ordeal you had. Can you tell me what you meant by the daily regimen of meds "took over my life" and we stopped the antibiotics? What was happening then? And was the MAC gone at that time? Has it returned?

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My body was reacting badly in every way to the antibiotics once the frequency was increased from 3x weekly to daily - nausea, fatigue, body aches, hair loss, weight loss, depression... I never had a negative sputum culture, but after 18 months the nodules were smaller and fewer, the gray areas (ground glass opacities) were gone. So with my ID doc and pulmo, I decided to stop the meds and continue 7% saline and airway clearance along with healthy diet and exercise. I have had some a exacerbations we treated with nebs and occasional steroids. I think I may have had one round of antibiotics for bronchitis.
Now I am awaiting word on whether we will do just a CT or a sputum culture as well as I approach 4 years off the meds. My team believes there is nothing to be gained by doing a culture as long as my lungs are stable in the imaging, and we have no intention of ever starting meds again unless I become seriously symptomatic.
We are all so different in our response to treatment...
Sue

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Rick | @rstel7272 | Jul 31, 2023
In reply to @melinda561 "What is the pot roast diet? Thanks. Thanks" + (show)
@melinda561

What is the pot roast diet? Thanks. Thanks

Jump to this post

Literally pot roast as often as possible, pasta and sugary stuff in between. I had quite fun with my nutritionist at NJH. She told my wife to add extra olive oil to my spaghetti sauce. So I just named it the "Pot Roast Diet". I do love pot roast.

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irene5 Irene Estes | @irene5 | Aug 1, 2023
In reply to @rstel7272 "I went from a 5'11" slim 147 to 128 pounds, started treatment and the "pot roast..." + (show)
@rstel7272

I went from a 5'11" slim 147 to 128 pounds, started treatment and the "pot roast diet" and gained over 40 pounds over 3 years. Then a fungal infection set in and I lost 20 again but since treatment I have gained over 10 pounds back.

Jump to this post

I started losing weight and ended up losing 18% off an already petite frame. Even with Garden of Life supplements and gallons of vanilla ice cream I have never gained it back. All I have ended up with is high cholesterol! Being rid of MAC was wonderful news but ending up with aspergillosis post MAC has been another no bueno for me! I weigh my age which is just crazy! Let me add it’s hard to gain weight when your appetite isn’t there no matter what healthy high calorie options are available. I graze all day which is easier for me than three good sized meals. I’m a cheap date for my family! irene5

REPLY
1 reply
Rick | @rstel7272 | Aug 1, 2023
In reply to @irene5 "I started losing weight and ended up losing 18% off an already petite frame. Even with..." + (show)
@irene5

I started losing weight and ended up losing 18% off an already petite frame. Even with Garden of Life supplements and gallons of vanilla ice cream I have never gained it back. All I have ended up with is high cholesterol! Being rid of MAC was wonderful news but ending up with aspergillosis post MAC has been another no bueno for me! I weigh my age which is just crazy! Let me add it’s hard to gain weight when your appetite isn’t there no matter what healthy high calorie options are available. I graze all day which is easier for me than three good sized meals. I’m a cheap date for my family! irene5

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I can't believe how many of up now have aspergillus after defeating Mac. I really hate voriconazole, it is destroying my skin. I pray I don't get skin C.

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harrynsc | @harrynsc | Aug 1, 2023
In reply to @byurose "Last year (2022) I was diagnosed with bronchiectasis and with MAC. I was extremely reluctant to..." + (show)
@byurose

Last year (2022) I was diagnosed with bronchiectasis and with MAC. I was extremely reluctant to begin the popularly recommended Big 3 antibiotic regimen because having practiced Yoga for about 50 years and a (mostly) healthy lifestyle proponent for many years, I did not want to go down the drug path. After researching extensively talking to several doctors I trusted, I was convinced that I must do the Big 3 or face sure destruction of my lungs and very sad old age. After one false start with complications for a few weeks, I resumed the Big 3 only three weeks ago. I'm taking probiotics, multiple vitamins, walking a fast mile 2 or 3 times a week, eating voraciously, but also losing weight - and muscle scarily. From a about 124 lbs. to now 115, I don't know what to do. But in my research I've found some promising studies into Kampo medicine's effectiveness in MAC. Has anyone else had experience or knowledge of this?

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Yes, probiotics are good!
My oncologist prescribed a low dose of Megace, a cancer drug, but a known side effect
is weight gain. (a risk is blood clots)
One key for people over 60 is to increase protein.
Harry

REPLY
byurose | @byurose | Aug 6, 2023
In reply to @rstel7272 "I went from a 5'11" slim 147 to 128 pounds, started treatment and the "pot roast..." + (show)
@rstel7272

I went from a 5'11" slim 147 to 128 pounds, started treatment and the "pot roast diet" and gained over 40 pounds over 3 years. Then a fungal infection set in and I lost 20 again but since treatment I have gained over 10 pounds back.

Jump to this post

@rstel7272 What is the pot roast diet?

REPLY
1 reply
Rick | @rstel7272 | Aug 6, 2023
In reply to @byurose "@rstel7272 What is the pot roast diet?" + (show)
@byurose

@rstel7272 What is the pot roast diet?

Jump to this post

Literally pot roast as often as possible, pasta and sugary stuff in between. I had quite fun with my nutritionist at NJH. She told my wife to add extra olive oil to my spaghetti sauce. So I just named it the "Pot Roast Diet". I do love pot roast.

REPLY
1 reply
byurose | @byurose | Aug 7, 2023
In reply to @rstel7272 "Literally pot roast as often as possible, pasta and sugary stuff in between. I had quite..." + (show)
@rstel7272

Literally pot roast as often as possible, pasta and sugary stuff in between. I had quite fun with my nutritionist at NJH. She told my wife to add extra olive oil to my spaghetti sauce. So I just named it the "Pot Roast Diet". I do love pot roast.

Jump to this post

Thanks. I like pot roast too, but I don't think I could handle it often.

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