(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@windwalker

@sandykayhud Hi there. Your story of having the mac return is a common one. I have tested negative for mac since 2014. I have been on monthly maintenance dose antibiotics ever since to keep it from coming back. The return of mac or pseudomonas are more probable if you have bronchiectasis. Do you also have bronchiectasis?

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Yes, I was diagnosed with Bronchiectasis first.

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@windwalker

@sandykayhud Hi there. Your story of having the mac return is a common one. I have tested negative for mac since 2014. I have been on monthly maintenance dose antibiotics ever since to keep it from coming back. The return of mac or pseudomonas are more probable if you have bronchiectasis. Do you also have bronchiectasis?

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yes, i was diagnosed with bronchiectasis first

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@pfists

@ling123
Yes ciprofloxin and leviquin is two I won't take because of the dangers. I believe it's the fluoride in it that makes it so toxic. I suppose that's the part that makes it effective against pseudomononas and mycobacteria. They need to come up with better alternative drugs.
Shari

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Hi pfists…sorry to interrupt…I too am dealing with psedomonas. I presently nebulize Co,istin every other month at 150 ml…75 ml x2 a day…keeps it at bay.. what r u taking to keep psedomonas at bay?? B

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@megan123
Hi
I have used toby nebs usually.
They have done suseptibility tests too and have used a few other things that worked like cefuoxime or augmentin. I think that if you use the same thing a lot you run the chance of making any particular bacteria resistant to it.
I use to use cipro but won't now because of side effects. Tobys have never bothers me and works well except it cost 70.00 a month for me.
Anyway hope this helps navigate the water for you!
Take care
Shari

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@ling123

@windwalker Terri, I agree with you. I can't think of a drug that does not have any side effects. Once ingested they are foreign substance in our body. But we absolutely need to weigh the pros and cons and try not to scare ourselves into quitting to fight the diseases that can have debilitating effects on our lives. All we can really do is to be vigilant and be educated so we can be one step ahead of adversities. After reading about the side effects of Ibuprofen, I was very alarmed and almost decided to completely stop using it. But after some research, I realized that just about all the pain killers have similar side effects. Unless I completely stop using it for the rest of my life, I will have to deal with such side effects. I know that as we are aging, it is not practical to make a decision like that. All I can do is try to cut back to the least amount that I need and bear the risk for it.

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I hear ya, @ling. I us

Liked by Jennifer

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@suzyqueue

The hoarsness lets up after a couple/few weeks. Also it helps to do the treatment before bed immediately after your albuterol treatment. That way your vocal chords are resting and you aren't using them. So far hoarsness isn't a side effect I'd be concerned about with the success this treatment has had. I was hoarse for a couple weeks but now I'm not.

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Hi: I have done 5 treatments with the Arikayce. I have completely lost my voice and can not speak above a whisper. My dr wants me to do the treatments in the morning. Did you discontinue the Arikayce for a period of time or did you keep taking it even during the time of your voice problems. I have not had any other major effects, some coughing and tinge of blood but nothing I can't deal with. I am not doing any other treatments except Breo inhalation. Thanks for any insight.

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@sandykayhud

Hi: I have done 5 treatments with the Arikayce. I have completely lost my voice and can not speak above a whisper. My dr wants me to do the treatments in the morning. Did you discontinue the Arikayce for a period of time or did you keep taking it even during the time of your voice problems. I have not had any other major effects, some coughing and tinge of blood but nothing I can't deal with. I am not doing any other treatments except Breo inhalation. Thanks for any insight.

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Hi @sandykayhud , I had the same problem, I had a break for about 3 days, until I had a voice, and re started.I arkariced at night before bed and diddnt talk after, I rinsed my mouth out with water after the treatment and sucked on half a Strepfen, it worked wonders. Having no voice was very frustrating, I hope yours comes back soon.

Liked by anniepie

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@heathert

Hi @sandykayhud , I had the same problem, I had a break for about 3 days, until I had a voice, and re started.I arkariced at night before bed and diddnt talk after, I rinsed my mouth out with water after the treatment and sucked on half a Strepfen, it worked wonders. Having no voice was very frustrating, I hope yours comes back soon.

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@heathert Hi everyone, it looks like nobody has posted for a while — unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

Liked by heathert

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@anniepie

@heathert Hi everyone, it looks like nobody has posted for a while — unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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I noticed it too. Maybe it is just an odd lull in messages.

Liked by anniepie

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@anniepie

@heathert Hi everyone, it looks like nobody has posted for a while — unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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Hi @anniepie @fdixon63 and all MAC members. Indeed there has been a lull in messages posted in the MAC group lately. That happens sometimes. I'd like to think that perhaps people are enjoying the waning months of summer outdoors or traveling, etc. Members like @windwalker @boomerexpert and others in Florida are certainly pre-occupied with Hurricane Dorian. We all hope they are taking precautions to stay safe.

Perhaps some of you would like to take a moment to browse through the discussions in the MAC forum and check in on fellow members. Here's the link to see all discussions: https://connect.mayoclinic.org/group/mac-bronchiectasis/

Liked by anniepie

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@fdixon63

I noticed it too. Maybe it is just an odd lull in messages.

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Guess we got all our questions answered… 😉 – back atcha @anniepie!

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@anniepie

@heathert Hi everyone, it looks like nobody has posted for a while — unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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Thanks @anniepie, it is usually a very busy site, Im sure everyone will return soon.

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@heathert

Thanks @anniepie, it is usually a very busy site, Im sure everyone will return soon.

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@heathert @boomerexpert @fdixon63 Thanks Colleen and everyone — thinking of you all. And my thoughts are with people in Florida too. Annie

Liked by heathert, tdrell

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@anniepie

@heathert Hi everyone, it looks like nobody has posted for a while — unless there is something wrong with my access to this forum site. I hope everyone is okay and I wish you all well, Annie

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@anniepie Hi Annie! I noticed this site got quite too. It sometimes does that. It has a pattern like waves. Crests and troughs. How have you been doing?

Liked by anniepie

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@anniepie

@heathert @boomerexpert @fdixon63 Thanks Colleen and everyone — thinking of you all. And my thoughts are with people in Florida too. Annie

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Colleen is right, I am prepping and preparing for evacuation. So far, it is looking like we could be a direct hit for hurricane Dorian. So far, the model has all of the same patterns as hurricane Mathew that freakishly turned and devastated Hilton Head Island several yrs ago. I live on the other side of the bridge that goes onto Hilton Head. At this point, it is hard to tell which direction to drive out of here to.

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