(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 | Jun 1, 2021

In reply to @anniepie "Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem..." + (show)

Thanks @anniepie so pleased I could help. take care Heather

anniepie | @anniepie | Jun 2, 2021

In reply to @goatlady "I also had bad diarrhea from it, it was kind of a two fold thing. I..." + (show)

Hi Diane -- nice to use your name! Thanks very much for replying.

You are not alone in having problems with Arikayce -- quite a lot of people are forced to drop out due to big side effect problems. Up to one third of all people who are put on it apparently.

Like you I wish I was one of the people who could just sail through without too much trouble!!!

Did you also have breathlessness -- even after using salbuterol -- and much worse lung problems when using Arikayce? (I know it makes many people cough a lot, but I mean worse bronchiectasis or lung disease as well).

I really don't know what's happening. Today it's so rough I think I might either have to delay the Arikayce or stop it for a day -- every day is getting worse on my lungs.

Diane, Heather, Irene (@goatlady, @heathert, @irene5) and Jenny, while on Arikayce, did any of you also feel like your lungs were really getting kicked around and / or feel a lot more breathless too?

Annie

heathert | @heathert | Jun 2, 2021

In reply to @anniepie "Hi Diane -- nice to use your name! Thanks very much for replying. You are not..." + (show)

@anniepie not me, I felt good on it. Heather

anniepie | @anniepie | Jun 5, 2021

In reply to @heathert "@anniepie not me, I felt good on it. Heather" + (show)

Thanks Heather -- I wish I was the same, But I'm still going and still trying - taking it day by day

alessandre | @alessandre | Jun 5, 2021

Have had bronchiectasis almost 27 years, MAC which I seemed to have kicked for now, some 6-10. When went into nightly sweats, frequent shortness of breath, lost about 15 pound (& am thin) 3 years ago - after years of antibiotics with every little exacerbation - & the cocktail was prescribed I'd had enough, went "alternative," have had peaceful 3 years tho now need some adjustments around colloidal silver. But seem to have kicked MAC for now - nothing in last sputum test. anyway, I've depended on healthy diet, whatever exercise could do & as frequently as could do it; herbs like olive leaf extract, pau d'arco, lots other supplements. I think it generally good idea not to depend strictly on "allopathic" medicine, expand your horizons, if can afford it, check into naturopathy, homeopathics, etc. As I learned to do, then forgot, around cancer which I had (ovarian) from 20s to 30s, now MUCH older. - Blessings, good luck all!

anniepie | @anniepie | Jun 23, 2021

In reply to @heathert "@anniepie not me, I felt good on it. Heather" + (show)

Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm not able to take Arikayce anymore and have stopped it after seeing my pulmo yesterday.
I was only 3 months in with this drug and it's just bad luck, but I got some heavy side effects and they were realy getting too difficult for me, so it had to stop.
First the tinnitus and hearing loss I got with the big 3 became worse on hearing tests after the Arikayce, then lung trouble and breathlessness got a lot worse every day too.
I'm very disappointed because I was really hoping it would help me, and I was really trying to tough it out.
But I guess I'm also feeling relieved to stop it now too.
I hope the worsened lung problems recover as much as possible in the next few months. Louder tinnitus and more hearing loss is permanent unfortunately, but I guess it's just the price we have to pay sometimes,
I hope that Arikayce helps for.all of you who are able to take it much more safely than me -- I wish the very best of luck to you.
Annie x

heathert | @heathert | Jun 23, 2021

In reply to @anniepie "Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm..." + (show)

@anniepie So sorry to hear that Annie, hopefully that 3 months on it has done some good for you, does your Dr have another plan. Take care Heather

irene5 Irene Estes | @irene5 | Jun 23, 2021

In reply to @anniepie "Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm..." + (show)

Annie I am sorry you had to discontinue the Arikayce. I totally understand. Don’t beat yourself up about it. We all do the very best we can with this, and sometimes our bodies just say,” no bueno.” C’est la guerre! I’d say, “That’s life” , but MAC is more of a war. The good news is you gave it a try. It didn’t work for you. Someday, God willing, there will be a cure for this relentless disease. Irene

irene5 Irene Estes | @irene5 | Jun 23, 2021

In reply to @anniepie "Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm..." + (show)

Annie what I should say is someday, God willing, there will be a tolerable cure! Irene

goatlady | @goatlady | Jun 23, 2021

In reply to @anniepie "Hi Heather, Diane and Irene (@heathert @goatlady @irene5 ), I'm just letting you know that I'm..." + (show)

I only lasted 3 days. The tinnitus was deafening and I had horrible diarrhea that lasted months. I had high hopes for it also, but I knew almost immediately that this wasn't going to work for me. I am so sorry that you had such a bad experience with it also. Sending prayers your way.
Diane

View More View Less

Please sign in or register to post a reply.