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.

egayle187 | @egayle187 | Dec 1, 2018

@extratiredalway ...It will get better.Listen to your body. Rest when you are tired. You may have to cut back on activities until the MAC has been wiped out, but you will feel better.After awhile I felt better on non-med days and planned my schedule accordingly.Please search through the discussion groups; they will help you find others with similar situations. I've been free of MAC for 4 years now and off oxygen, too.

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2 replies
spencersok | @spencersok | Dec 1, 2018

My wife was on the Triple Treatment and had to discontinue it. Since she is Immune Suppressed, she was bed-ridden for the total six months. The treat helped her for awhile after she discontinued it, but the cough has come back, worse than before. I have been searching for an "alternative treatment, I am not medical savvy, but I do lots of internet research, that's how I found this group. My question, Has anyone out there been treated with AMIKACIN?

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2 replies
america | @america | Dec 1, 2018
In reply to @anniepie "@xfirerose @america @boomerexpert @jkiemen I hope Rita and others you have found a way to treat..." + (show)
@anniepie

@xfirerose @america @boomerexpert @jkiemen I hope Rita and others you have found a way to treat the oral thrush in the mouth an throat. Yes it seems we really have to stay away from the drugs that interact with our MAC meds. Please let us know how you are going now.
I looked up some natural alternatives that might help, and checked them against the Big 3 to make sure they are okay:
1. swabbing inside the mouth with pure, virgin coconut oil (caprylic acid is the active ingredient)
2. yogurt swabs of the oral area/ (needs to be plain yoghurt)
3. use vinegar diluted in water (start with very dilute, using a lot more water) -- sip this from a cup and gargle or swish around in your mouth for a while, then spit out.

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Thanks for the information! I will try that.

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extratiredalway | @extratiredalway | Dec 1, 2018
In reply to @egayle187 "@extratiredalway ...It will get better.Listen to your body. Rest when you are tired. You may have..." + (show)
@egayle187

@extratiredalway ...It will get better.Listen to your body. Rest when you are tired. You may have to cut back on activities until the MAC has been wiped out, but you will feel better.After awhile I felt better on non-med days and planned my schedule accordingly.Please search through the discussion groups; they will help you find others with similar situations. I've been free of MAC for 4 years now and off oxygen, too.

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Thank you for your sound advice. I will surely follow it since you have already traveled down this path.

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hydrang3a | @hydrang3a | Dec 1, 2018

@Spencersoc. I have been on daily Amikacin since Nov 12. Also on the big 3 and Xopenex, Saline, and vest vibration twice daily. Amikacin is a lot of maintenance and has side effects most notably a sore throat and temporary loss of voice. Since this is a new drug most doctors are getting more information from me through this blog and through my experience than they are able to provide themselves.

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anniepie | @anniepie | Dec 1, 2018
In reply to @egayle187 "@extratiredalway ...It will get better.Listen to your body. Rest when you are tired. You may have..." + (show)
@egayle187

@extratiredalway ...It will get better.Listen to your body. Rest when you are tired. You may have to cut back on activities until the MAC has been wiped out, but you will feel better.After awhile I felt better on non-med days and planned my schedule accordingly.Please search through the discussion groups; they will help you find others with similar situations. I've been free of MAC for 4 years now and off oxygen, too.

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@egayle187 Thanks so much for this advice from me too. @extratiredalway I know how you are feeling, I am so tired too and put on the big 3 just recently - good luck to all of us

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1 reply
extratiredalway | @extratiredalway | Dec 2, 2018
In reply to @anniepie "@egayle187 Thanks so much for this advice from me too. @extratiredalway I know how you are..." + (show)
@anniepie

@egayle187 Thanks so much for this advice from me too. @extratiredalway I know how you are feeling, I am so tired too and put on the big 3 just recently - good luck to all of us

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Yes good luck to us all. I am so pleased that I stumbled across this site. I felt so alone dealing with my issues. Knowing that there are others going through the same problems makes me feel less doomed.

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1 reply
Jane S. Brown | @macjane | Dec 2, 2018
In reply to @spencersok "My wife was on the Triple Treatment and had to discontinue it. Since she is Immune..." + (show)
@spencersok

My wife was on the Triple Treatment and had to discontinue it. Since she is Immune Suppressed, she was bed-ridden for the total six months. The treat helped her for awhile after she discontinued it, but the cough has come back, worse than before. I have been searching for an "alternative treatment, I am not medical savvy, but I do lots of internet research, that's how I found this group. My question, Has anyone out there been treated with AMIKACIN?

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Does anyone suffer from severe depression with sarcoidosis. Jane Brown

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1 reply
irene5 Irene Estes | @irene5 | Dec 2, 2018
In reply to @macjane "Does anyone suffer from severe depression with sarcoidosis. Jane Brown" + (show)
@macjane

Does anyone suffer from severe depression with sarcoidosis. Jane Brown

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My husband does and is on two antidepressants.

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america | @america | Dec 2, 2018
In reply to @xfirerose "@america, I have had a battle with thrush in my mouth and throat. It finally took..." + (show)
@xfirerose

@america, I have had a battle with thrush in my mouth and throat. It finally took a round of two antifungal drugs to finally get rid of it. I also have CVID and I am on antibiotics frequently. These and steroids start my thrush infections. When it is in my throat I gag and have a hard time swallowing.

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Does anyone think reflux could cause sore throat?

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