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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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 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.

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@526 Laura Nausea is horrible, ginger lollies and ginger and licorice tea helped for me. good luck

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Flib | @flib | Sep 19, 2018
In reply to @lch713 "@Flib - how much weight have you lost since starting treatment?" + (show)
@lch713

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

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@lch713 About 26 pounds over several years. I was fairly steady at 110 but that has changed. I bought non lactose ice cream today and I'll go back on smoothies trying Garden of Eden and see if I'm OK with it. I see my health declining; not able to take any of the antibiotics. I had been on azithromyacin but lost quite a bit of hearing and my pulmonary doctor took me off it when we realized what was happening. I'm faithful to nebulizing but my lungs seem to be filling up more regardless. Thanks for asking.

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3 replies
Flib | @flib | 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 You describe my problem with food exactly. Eating is a chore and trying to figure out what to eat is a chore and being skinny is a pain. I'm casting a spell on the next person who tells me to go eat a hamburger.

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2 replies
alleycatkate | @alleycatkate | Sep 19, 2018
In reply to @flib "@lch713 About 26 pounds over several years. I was fairly steady at 110 but that has..." + (show)
@flib

@lch713 About 26 pounds over several years. I was fairly steady at 110 but that has changed. I bought non lactose ice cream today and I'll go back on smoothies trying Garden of Eden and see if I'm OK with it. I see my health declining; not able to take any of the antibiotics. I had been on azithromyacin but lost quite a bit of hearing and my pulmonary doctor took me off it when we realized what was happening. I'm faithful to nebulizing but my lungs seem to be filling up more regardless. Thanks for asking.

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@flib I am sorry to hear of your troubles and that your lungs are filling.. Have you tried the clear lung herbal remedy? I wonder if that would help. ?? I do think that you will like the Garden of Eden Vanilla with a banana...that used to be my breakfast for over a year. Very nourishing. Kate

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1 reply
526laura | @526laura | Sep 19, 2018
In reply to @flib "@lch713 About 26 pounds over several years. I was fairly steady at 110 but that has..." + (show)
@flib

@lch713 About 26 pounds over several years. I was fairly steady at 110 but that has changed. I bought non lactose ice cream today and I'll go back on smoothies trying Garden of Eden and see if I'm OK with it. I see my health declining; not able to take any of the antibiotics. I had been on azithromyacin but lost quite a bit of hearing and my pulmonary doctor took me off it when we realized what was happening. I'm faithful to nebulizing but my lungs seem to be filling up more regardless. Thanks for asking.

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My heart goes out to you.
Wish I had some answers

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1 reply
526laura | @526laura | Sep 19, 2018
In reply to @boomerexpert "A few suggestions, things that have worked for me: Get anti-nausea med from your doc But..." + (show)
@boomerexpert

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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I’ll try that.
Thank you.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 19, 2018
In reply to @flib "@lch713 About 26 pounds over several years. I was fairly steady at 110 but that has..." + (show)
@flib

@lch713 About 26 pounds over several years. I was fairly steady at 110 but that has changed. I bought non lactose ice cream today and I'll go back on smoothies trying Garden of Eden and see if I'm OK with it. I see my health declining; not able to take any of the antibiotics. I had been on azithromyacin but lost quite a bit of hearing and my pulmonary doctor took me off it when we realized what was happening. I'm faithful to nebulizing but my lungs seem to be filling up more regardless. Thanks for asking.

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@flib Hi. What state do you live in?

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unicorn | @unicorn | Sep 19, 2018
In reply to @flib "@america You describe my problem with food exactly. Eating is a chore and trying to figure..." + (show)
@flib

@america You describe my problem with food exactly. Eating is a chore and trying to figure out what to eat is a chore and being skinny is a pain. I'm casting a spell on the next person who tells me to go eat a hamburger.

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Flib and America...hahaha yes cast a spell! I am 5"11' and weigh 124, can't stop losing. Tomorrow I will try smoothies, anything. People always try to get me to eat but it goes right through. My cheeckbones are way too prominant.
azithromyacin for 2 years wiped out bowels, and tinnitus is so extreme, evil stuff. not alone! xo

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3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 19, 2018
In reply to @flib "@america You describe my problem with food exactly. Eating is a chore and trying to figure..." + (show)
@flib

@america You describe my problem with food exactly. Eating is a chore and trying to figure out what to eat is a chore and being skinny is a pain. I'm casting a spell on the next person who tells me to go eat a hamburger.

Jump to this post

@flib and @america, I had the same issue. Nothing tasted good and had zero appetite. I thought I'd never like food again. Once the infection was knocked out, all of that changed. Food tastes good again, and have my appetite back. (Putting on some fat too). I hope that you two can get back to enjoying food again too before long. Hugs!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 19, 2018
In reply to @unicorn "Flib and America...hahaha yes cast a spell! I am 5"11' and weigh 124, can't stop losing...." + (show)
@unicorn

Flib and America...hahaha yes cast a spell! I am 5"11' and weigh 124, can't stop losing. Tomorrow I will try smoothies, anything. People always try to get me to eat but it goes right through. My cheeckbones are way too prominant.
azithromyacin for 2 years wiped out bowels, and tinnitus is so extreme, evil stuff. not alone! xo

Jump to this post

@unicorn I am feeling for you Christa.

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