(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

@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

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Hello @krz4ua, do you have a first name .. makes it so much more personal! Curious .. what were the 14 injections? Being told that you will be on the meds on the 18 months at least is pretty typical. Lucky you had the CT scan etc and you were finally diagnosed with the MAC. If you read the past pages of our Forum you will learn a great deal about our MAC disease .. it will help you greatly in communicating with your doctor! Plus you will find a lovely supportive group of people who share your MAC journey. Glad that Colleen supplied the link for videos .. we have the links on our Forum. Hope you keep coming back to our Forum! Sending you a Hug! Katherine

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@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

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Terri, thanks for jumping in and welcoming a new member .. I knew you would! Hugs! Katherine

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@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

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@irene5, Irene, that is so interesting .. I really wonder if Mayo Clinic is doing ANYTHING about reporting! I think I am going to copy your post and send to Dr. Aksamit .. ask him if Mayo is doing ANY type of record keeping on MAC patients.

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@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.

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@lindam272 .. Linda… Man, what a tough cookie you are! Warrior? YES you are! I am impressed! What a attitude you have .. there is not a doubt in my mind that you will beat this thing! I am REALLY glad you found our Forum .. you have a LOT to give and share with others here .. just your great attitude will help others! So many of your thoughts and experiences resonates with me .. thank you for sharing. Please coming back! Hugs to you! Katherine

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@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.

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@lindam272 .. Linda, Sophie gave you good advice. On past pages I have notes all the “base line” tests you should get plus the monthly and quarterly tests you should get based on which drugs you are taking. Hugs! Katherine

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@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.

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@sophie1019 Sophie that is really interesting! Would you share that color blindness app for smart phones? I had never heard about it! I had to stop the 5th antibiotic I was taking (Ethambutol) due to vision loss. I WISH I’d had that app .. might have caught it quicker! This app might help others!! Please share it! Hugs! Katherine

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@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.

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lindam272 and Kay, the “remission” is called “stable” by my Dr. Aksamit of Mayo Clinic. If I am understanding him correctly .. it means the mycobacterium is still present in my lungs but is not “colonizing” (multiplying). Yes, I am “fine” and consider myself “well” .. but I don’t kid myself .. I am fully aware that the mycobacterium CAN begin to multiply in the future and as Kay says .. it is VERY important to live as healthy as possible and just FORGET about the MAC .. just be positive and be happy! As Kay said so well .. just give up ANY worry .. it will drive you nuts! My motto is “Put my energy into what I can control .. and let go of what I CAN’T control!” That takes away all the worry .. because we REALLY can’t control this disease .. ONLY our effort toward our healthy living! So Linda .. be happy .. be positive .. and keep coming back! Sending you a hug! Katherine

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@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.

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@Paula_MAC2007 Paula, what a great post! I LOVE your idea of “try reading thru the many pages of the posts, and copy and paste those that are important to you into a MS Word document so you can easily find the info”. That is a wonderful idea! I am going to try to add it under my initial post so people see it BEFORE they start reading! Hugs to you! Katherine

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@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.

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Terri, great response! Funny .. but I remembered something about a response about “readings” .. spent too much time going through my deletes .. finally found your post .. THEN realized it was YOU!! What a silly waste of my time .. wish I’d remembered I was you! Thanks for a good answer! Hugs! Katherine

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@justjanet

Kay,
My bronch. is in the lingula and right middle lobe and my MAC (nodules)is in right middle lobe and posterior left lower lobe. I wasn’t told much by my doctor at Duke. But, when they were wheeling me in for the bronchoscopy she said “well, you must not have it very bad if you can’t cough up a sample on your own”. That was just another reason I knew I needed to switch Dr’s. I probably don’t have a severe case now. But, whether a person can cough up sputum on their own or not has nothing to do with the severity of their disease. Even I know that much from my research. So ixnay on that doc :). Luckily I found another. Tomorrow I have several appts at UNC Center for Bronchiectasis Care. They also specialize in the treatment of NTM’s. I think they will be able to give me much better answers on how I should proceed. I may not need treatment yet as my symptoms aren’t bad – lack of appetite is the worst of them. But, I have lots of questions and it will be nice to talk to someone I trust knows a lot about this. I’ll let y’all 🙂 know what I think of the clinic. It might be a good resource for anyone that is close to Chapel Hill, NC. We have so few places like that to go to. I would like to learn more about clearing my lungs. There are times when they feel “full” and I know from reading these posts that there are exercises that we can learn to help clear some of that. Maybe I’ll learn more about that tomorrow too. I’ll let you know. Janet

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@kaystrand and @suttonmac2009 .. I read some place and don’t remember why .. but that going to sleep on the left side will lessen the coughing when trying to go to sleep. It then stands to reason that if trying to get the sputum up .. lying on the right side might help in getting up the sputum? Just a thought? Katherine

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@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?

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Hello Marie, welcome to our Forum. I hope people from our group can jump on and give you some help. Please keep coming back .. and read back pages .. there is a lot of good information on our MAC disease to help you on your journey! Hugs to you. Katherine

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@lindam272

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

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Katherine, Nice to see you back! Your uplifting energy and spirit flowed through the pages of this discussion group and, along with all the others, has really helped me get some perspective on what I am dealing with. I’ve been out of town for a few days so wasn’t on the discussion group while gone. Right now I am on the Azithromycin, which I began around mid-December and the Ethambutol (1200mgs), which I began the day after Christmas. I start my Rifampin tomorrow (1/7). So far I haven’t had much trouble at all. I’m not sleeping as well – waking up every 2 hrs, and I’ve had a couple of headaches that have been annoying but all-in-all I appear to be blessed with not having any stomach troubles. Hoping that the Rifampin doesn’t change that a lot. I’ve noticed in my breathing treatments (twice a day) that the mucous is clearer and I’m not getting up as much as I was when I first started. I’m hopeful and actually excited to be on a path towards better health! As I told my infectious disease doc – Let’s get on with this and get it done! I’ve got lots to do! Linda

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@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.

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Thanks Katherine and Sophie, I saw my opthamologist just recently and will see him again the end of this month and then quarterly. I have a baseline hearing test scheduled for next week as well. I put the color blindness app on my phone. Katherine – just go to the apps icon on your phone and type in color blindness and it will come up. It’s free so you can download it to your phone and check it as often as you want. Linda

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@sophie1019 Hi Sophie, if it is ok with you I will share the apps of color blindness, CBT, visual test, and visual acuity test.!

Yes, both my color and distance vision did return .. it took about a year .. but I regain it fully! Frankly it was a bit scary but luckily it was caught early .. THAT is the key .. that is why these visual apps are so helpful I think!! Thank you for bringing it up! Hugs to you! Katherine

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@katemn

@sophie1019 Hi Sophie, if it is ok with you I will share the apps of color blindness, CBT, visual test, and visual acuity test.!

Yes, both my color and distance vision did return .. it took about a year .. but I regain it fully! Frankly it was a bit scary but luckily it was caught early .. THAT is the key .. that is why these visual apps are so helpful I think!! Thank you for bringing it up! Hugs to you! Katherine

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I might have missed it.. but if you could let me know the apps, that would be great.
Iam glad your color and distance returned!

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