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.

526laura | @526laura | Sep 19, 2018
In reply to @america "What I read about weight loss and Mac... that’s a side effect so we can try..." + (show)
@america

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.

Jump to this post

I went down to 108 but have been able to maintain this weight.

My problem is food makes me sick. Doesn’t matter what I eat I get nauseous.
And I’m a big baby about being nauseous. Pain I can handle. Not an upset tummy.

REPLY
3 replies
lch713 | @lch713 | Sep 19, 2018
In reply to @america "What I read about weight loss and Mac... that’s a side effect so we can try..." + (show)
@america

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.

Jump to this post

My husband's palate changed when he started the big 3. He used to love spicy food and now cannot tolerate hardly any spice because they are intensified, same with sweets. His weight loss also seems to have increased since he started the treatment, but I suppose that could be coincidence and is really related to disease progression. How quickly did you drop the 30 lbs? Were you on treatment when weight loss happened?

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1 reply
oldkarl | @oldkarl | Sep 19, 2018
In reply to @america "What I read about weight loss and Mac... that’s a side effect so we can try..." + (show)
@america

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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@america About losing weight with MAC. As you try to deal with this Make CERTAIN that your MAC is not part of some form of Amyloidosis. There are thousands of forms and most of them cause weight gain or weight loss. Some are secondary to some chemical or other environmental matter, but most are hereditary. They must be treated entirely differently. One great source for info is ALNYLAM.com httjps://bit.Ly/1w7j4j8

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1 reply
america | @america | Sep 19, 2018
In reply to @lch713 "My husband's palate changed when he started the big 3. He used to love spicy food..." + (show)
@lch713

My husband's palate changed when he started the big 3. He used to love spicy food and now cannot tolerate hardly any spice because they are intensified, same with sweets. His weight loss also seems to have increased since he started the treatment, but I suppose that could be coincidence and is really related to disease progression. How quickly did you drop the 30 lbs? Were you on treatment when weight loss happened?

Jump to this post

I started losing weight before I was diagnosed. I was just tired and coughing a lot but I thought it would go away.... until I started coughing up blood. Then I went to the pulmonologist and was tested there I found out i have these bugs. But I don’t think it’s the medication because I was not on meds for almost three years and keep losing weight. So I believe it’s this disease. Hope it helps Rita.

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america | @america | Sep 19, 2018
In reply to @oldkarl "@America About losing weight with MAC. As you try to deal with this Make CERTAIN that..." + (show)
@oldkarl

@america About losing weight with MAC. As you try to deal with this Make CERTAIN that your MAC is not part of some form of Amyloidosis. There are thousands of forms and most of them cause weight gain or weight loss. Some are secondary to some chemical or other environmental matter, but most are hereditary. They must be treated entirely differently. One great source for info is ALNYLAM.com httjps://bit.Ly/1w7j4j8

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Thanks I’ll check that out

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america | @america | Sep 19, 2018
In reply to @526laura "I went down to 108 but have been able to maintain this weight. My problem is..." + (show)
@526laura

I went down to 108 but have been able to maintain this weight.

My problem is food makes me sick. Doesn’t matter what I eat I get nauseous.
And I’m a big baby about being nauseous. Pain I can handle. Not an upset tummy.

Jump to this post

I understand what you’re saying. Nausea is not a good feeling and I’m so sorry you have to deal with that. I get it sometimes but it’s a good sign for me. I get nauseous whenever I am getting an infection... like a bladder or UTI and with no other symptoms. Hope it gets better Rita.

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boomerexpert | @boomerexpert | 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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I have lost weight as well - it is from the body fighting a serious infection and, in my case, RA too. The science shows that the body uses much energy, and calories, to fight infection, so look no further.
I can do no dairy, not even items with whey or casein in them, so face the same dilemma. I recommend:
French fries
Pizza with no cheese then add your own dairy free cheese
Other fried foods like deep fried fish, veggies, etc.
Avocado
(humanely raised) high fat meats such as sausage
Helped me!

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boomerexpert | @boomerexpert | Sep 19, 2018
In reply to @526laura "I went down to 108 but have been able to maintain this weight. My problem is..." + (show)
@526laura

I went down to 108 but have been able to maintain this weight.

My problem is food makes me sick. Doesn’t matter what I eat I get nauseous.
And I’m a big baby about being nauseous. Pain I can handle. Not an upset tummy.

Jump to this post

A few suggestions, things that have worked for me:
Get anti-nausea med from your doc
But even better, I get ginger candies from my local health food store...they work really well!
Finally, I use DGL ultra chewables (you must be able to tolerate licorice) and chew one before each meal to coat my stomach

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 19, 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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@irene5 Hi Irene! Good hearing from you!

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1 reply
heathert | @heathert | 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 always nebulised either outside or inside by an open door to outside, you do not want to neb amikacin around others as they can become immune to amikacin and if they need it in the future it wont work for them. Thats the info from my Dr. Take care

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