(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

@kwilbur

There is always a solution isn’t there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

Thank you! I have an appointment with the opthamologist at the end of this month and he will check me quarterly. I will call the audiologist tomorrow as their office is closed today. Linda

REPLY
@kwilbur

There is always a solution isn’t there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

My vision is great and,so is my hearing. I go back to the eye doc in February. Also if you hsve a smartphone, my pulmonogist recommended i download the color blindness test, the meds could possibly make you colorblind.

REPLY
@kwilbur

There is always a solution isn’t there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

Yes, that is correct. I was advised by my doctor to download the colorblind test as well. I am required to go for an eye exam every six months. Irene

REPLY

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

REPLY
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

Jump to this post

hello my name is marie i also live in tampa and looking for a dr i also have mac can you help

REPLY
@kwilbur

There is always a solution isn’t there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

I did that yesterday, thanks to this group!

REPLY

Marie – I just joined this forum also and live in Arizona so can’t help from that standpoint. The woman who started this forum is on vacation until early January. I began here by reading all 19 pages of posts. A bit daunting, but I did it over the course of 3 or 4 sittings and took breaks when I felt overwhelmed. I just finished yesterday. There is a ton of information here that will help you. I “favorited” the links to further information and resources, put the items that might be helpful for purchase on a wish list on Amazon (have since ordered pretty much all of them!) and just focused on the discussion. Now I will go back and read the additional information. I will do what I can to help until someone in the FL area jumps on here. You will probably have most of your questions answered through the posts. This is a very supportive group. You are not alone now! You have a bunch of people here to help you. Peace and Love, Linda

REPLY
@kwilbur

There is always a solution isn’t there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

Hi @lindam272, I’d like to add my welcome. I’m so glad you found us here on Connect’s oldest and longest discussion. There’s a wealth of information being exchanged, and lots to read — 19 pages of discussion! As you start treatment and perhaps have questions, you’ll find the answers here. If this group doesn’t have the answers, they go searching for them. @Paula_MAC2007 @kaystrand @kwilbur @heathert @tdrell will you join me in welcoming Linda?

Liked by lindam272

REPLY
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

Jump to this post

Welcome @marier. We have a few Floridians on this forum. @cathyt @dixer @boomerexpert @coylemel333 do you have any recommendations for a MAC specialist in the Tampa area?

Marie, you can also call Mayo Clinic Jacksonville for recommendations http://mayocl.in/1mtmR63
When were you diagnosed? Are you receiving treatment?

REPLY
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

Jump to this post

Hey Marie! If you live near downtown and TGH, or near St. Joe’s hospital off Dale Mabry, those docs will be better than the rest in the area – they’re a bit far for me so can’t access them myself. I live in Palm Harbor and have yet to find someone who demonstrates excellence. I will let you know if I find someone recommendable.

REPLY
@kwilbur

There is always a solution isn’t there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

Hi @lindam272 welcome to our group, I hope you can find lots of great information here, MAC/MAI is quite complicated, please dont hesitate to ask us anything, we are all in ths together and help each other along the way.

REPLY
@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

Jump to this post

Hi @marier welcome to our group, I hope someone on our group will be able to help you, I live in New Zealand so am unable to help, please dont hesitate to ask us anything you need to know, this is a wonderful group of caring people.

REPLY
@kwilbur

There is always a solution isn’t there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

Thank you, all! I am so much more knowledgeable after reading all these posts! I look forward to the support this group offers and hope that I can help someone else as we venture through this journey.

REPLY
@kwilbur

There is always a solution isn’t there? My best time is afternoon when I really have to clear my lungs. I will try.

Jump to this post

Welcome Linda
I started meds for MAC in July and the support of this group helped me through the beginning. I was very nauseated at first but good now for the most part. For me worry was the worst part. That’s much better thanks to the forum and just acceptance.

I just try to live healthy and then forget about the MAC as much as possible. I was depressed till I learned to let go. This group is positive.

Ask questions and keep letting us know how you are doing. Lots of folks have this crazy disease. It goes into a kind of remission, but we don’t know if there might be people out there who are totally well after meds and don’t bother being on this website. I know one personally who had MAC and her doc says she is fine now.

It’s very different for everyone. Hope you do well with it.

Darling picture of you. Take care. Good 2017 with healing!
Kay S

REPLY
@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

Jump to this post

Hello Marie, welcome I’m glad you found our forum. There is a Mayo Clinic in Jacksonville Fl. I don’t know how far is it from where you live. Read the forum way back I think there is a good Dr. that knows more about MAC. We are all here for you. I will have you in my prayer. Cila

REPLY
Please login or register to post a reply.