1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

heathert | @heathert | Sep 16, 2018
In reply to @sueinmn "New question - How do you avoid weight loss on MAC antibiotic therapy? I was recently..." + (show)
@sueinmn

New question - How do you avoid weight loss on MAC antibiotic therapy?
I was recently diagnosed with bronchiesctasis and sent to a pulmonologist by my primary physician. The cause was a seemingly endless asthma attack with a violent, productive cough that lasted for many months. He did many tests and cultures and diagnosed & treated pseudomonas for 2 months (4 courses of antibiotics (levaquin/tobramycin) and the cough continued. When I saw him for a followup, he apologetically told me I have MAI, and due to the cough, bronchiectasis and the lung damage showing on my CT scan, he felt it needed to be treated.
Enter the big 3 antibiotics - Rifampin, Ethambutol & Clarithromycin. He patiently spent time talking to me about the therapy and side effects, had suggestions about using live-culture yogurt & probiotics, and advised me to do my own research while waiting to start (had to finish Levaquin). He & his nurse were great at answering follow-up questions, but here is one for the group.
I began this journey at age 66, 5'2" tall and weighing 116 pounds, and I know I need to stay above 110# to feel okay. I also cannot eat any wheat products or tree nuts. The first 10 days of therapy is going well except intermittent nausea and slight diarrhea. But I have lost 3 pounds already without being sick, and I know from experience that there will be side effects from using antibiotics long-term. Any suggestions for maintaining my weight? I cannot tolerate Ensure and most products like that, which my doc suggested, so it's not an option. I also cannot eat any wheat products or tree nuts. Any suggestions for maintaining my weight?

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@sueinmn Our mentor Kathryn used Ice Cream and it worked well, you can also get a drink from your Dr if it gets too severe and it works great, or just eat lots.

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2 replies
america | @america | Sep 16, 2018
In reply to @sueinmn "Well, I've been gone for a few weeks with family & house guests, but I wanted..." + (show)
@sueinmn

Well, I've been gone for a few weeks with family & house guests, but I wanted to report that last Tuesday my husband finally got the diagnosis for his 6-month-old worsening cough from our pulmonologist - he ALSO has bronchiectasis (just a little at this point, and no scarring or white pockets indicating a long-term infection with MAC), and something else the doc calls "shadowing" in the lower lobes of both lungs. This comes just 3 months after my diagnosis. Doc is pretty sure both are the result of the rheumatoid arthritis he has had for over 30 years. Based on preliminary results on his sputum cultures, it also appears he has MAC but not pseudomonas. Doc is waiting for second result as confirmation before beginning treatment. So, this guy has been in practice for 27 years and says this is only the second time he has had both spouses with the same diagnosis!
On a happier note, I have been taking the "big 3" for over a month now, and am doing Okay as long as I use a daily probiotic, eat a light, somewhat bland and starchy meal before taking my meds, take each tablet with a bite of yogurt, and follow with a ginger ale cocktail (real ginger ale/beer with the chunks of ginger in it.) Skip any one of these, and I'm up sick in the night and feel awful the next day! By forcing myself to eat (have no appetite) I have managed to stabilize my weight after initially losing several pounds the first week. I use my Acapella every day, and my husband has started as well, but I'm going to ask the doc about saline nebs for us.
We use a Pari Vios neb, and it takes 12-14 min for 4ml session.

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@sueinmn, Hi! I am really encouraged by your post. You have so much on your plate, I wish you good health and hope you will be feeling better soon. Hugs.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 18, 2018
In reply to @heathert "@sueinmn Our mentor Kathryn used Ice Cream and it worked well, you can also get a..." + (show)
@heathert

@sueinmn Our mentor Kathryn used Ice Cream and it worked well, you can also get a drink from your Dr if it gets too severe and it works great, or just eat lots.

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@sueinmn Sue, when I got down to 116 lbs (down from 143 lbs) I added cheese & mayonaise to most vegetables, including mashed pototoes, & sandwhiches. I just tried pumping up the calories everywhere I could. Plus, I drank the protein shakes and would add ice cream to those. Now that I am infection free, I am watching that I don't put too much back on. I am now at 130 lbs. So, it's do-able girlfriend!

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Flib | @flib | Sep 18, 2018

I'm close to less than a 100 pounds. I can't do lactose so lots of high calorie eating is out for me. I have very little appetite but I do my best. ... three meals a day and snacks. Not sure of the science on this weight loss thing. I know the body is fighting off a disease but I think there is more to it. Wish I could fight with ice cream.Flib.

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3 replies
irene5 Irene Estes | @irene5 | Sep 18, 2018
In reply to @flib "I'm close to less than a 100 pounds. I can't do lactose so lots of high..." + (show)
@flib

I'm close to less than a 100 pounds. I can't do lactose so lots of high calorie eating is out for me. I have very little appetite but I do my best. ... three meals a day and snacks. Not sure of the science on this weight loss thing. I know the body is fighting off a disease but I think there is more to it. Wish I could fight with ice cream.Flib.

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@flib there are lots of things maybe you can try like Garden of Life meal replacements (actually meal additions) or lactose free ice cream. One of my children is lactose intolerant and takes a “lactose pill” before she eats foods she loves that have milk in them. The weight loss/lack of appetite goes with MAC quite often. Those bacteria try to make us fragile so they can do the most damage. It is clearly a war we must make every effort to win!

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2 replies
Flib | @flib | Sep 18, 2018
In reply to @irene5 "@flib there are lots of things maybe you can try like Garden of Life meal replacements..." + (show)
@irene5

@flib there are lots of things maybe you can try like Garden of Life meal replacements (actually meal additions) or lactose free ice cream. One of my children is lactose intolerant and takes a “lactose pill” before she eats foods she loves that have milk in them. The weight loss/lack of appetite goes with MAC quite often. Those bacteria try to make us fragile so they can do the most damage. It is clearly a war we must make every effort to win!

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Thank you. I have just bought Garden of Life for smoothies. I have tried lactose free ice cream and am able to get some of it down. Eating cold foods upsets my stomach.What can I say, I'm a very special person 🙂 I like what you say about warring bacteria...good way to look at it. Gets my Irish up.

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lch713 | @lch713 | Sep 19, 2018

Does anyone have info about whether there are risks to others present when an amikacin neb treatment is being administered? My husband is currently hospitalized for a bout of pneumonia and some of the RTs seem scared to death to be present when he's doing his treatment.

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2 replies
lch713 | @lch713 | Sep 19, 2018
In reply to @flib "I'm close to less than a 100 pounds. I can't do lactose so lots of high..." + (show)
@flib

I'm close to less than a 100 pounds. I can't do lactose so lots of high calorie eating is out for me. I have very little appetite but I do my best. ... three meals a day and snacks. Not sure of the science on this weight loss thing. I know the body is fighting off a disease but I think there is more to it. Wish I could fight with ice cream.Flib.

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@flib - how much weight have you lost since starting treatment?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 19, 2018
In reply to @lch713 "Does anyone have info about whether there are risks to others present when an amikacin neb..." + (show)
@lch713

Does anyone have info about whether there are risks to others present when an amikacin neb treatment is being administered? My husband is currently hospitalized for a bout of pneumonia and some of the RTs seem scared to death to be present when he's doing his treatment.

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@lch713 I don't know anything about that. If you see that reaction again, try asking them flat out about it. They probably won't mind the question. Hospital workers are exposed to so many things; they might just be worried about adding one more thing.

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america | @america | Sep 19, 2018
In reply to @heathert "@sueinmn Our mentor Kathryn used Ice Cream and it worked well, you can also get a..." + (show)
@heathert

@sueinmn Our mentor Kathryn used Ice Cream and it worked well, you can also get a drink from your Dr if it gets too severe and it works great, or just eat lots.

Jump to this post

What I read about weight loss and Mac... that’s a side effect so we can try to gain but I think the only way is when we are tested bug free. Because one of my problems is loss of appetite, I used to love food and cooking but recently I don’t feel hungry. I drink more protein shakes and ensures but I eat so little. I used to weigh 135 and now 100 or maybe 102.

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