(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

@katemn

@imeehaigt, Oh Imee! I am SO happy for you! What a wonderful day .. what wonderful news! Just continue to do your “due diligence” .. now that you have educated yourself .. you now know how to take good care of your body .. so IT can take good care of YOU! YEAH! Just continue to do what you know you should be doing .. DON’T let up! I am SO happy for you! The New Year will be a GOOD year for you! Sending you a hug! Katherine

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Katherine….have a great holiday season…happy and healthy! I will leave for NJH to start my long awaited evaluation on January 5 2017 with Dr Huitt who l admire and others who have had her …seem to also. I have all my doctors here…internist, Pulmonologist, ID, allergist who I regard highly but non the less know they are not NTM specialists. They are very professional and pleasant about me getting the “expert” opinion on my MAC. I had a very successful cataract removal last week since l knew l could not be checked for side effects on optic nerve with a cataract hiding the nerve….so that is done and went flawlessly and that new to me DR has had other clients with NTM so that is good..I set up appts every three months to be checked by him if l go on the ethambutol.

all you fellow NTMers will have an ironic laugh…..l realized that l would be in deep trouble post op from my horrible cough..which would disrupt all the work done on the eye…..so fortunately the pharmacist at Walgreens reecommended a strong anti cough medicine to take post operatively to stop my cough….Delysum….mostly dextromethorphan. and it worked! the cough was supressed although l was gorked out totally but …that is ok…l rested and slept.
Next project ….packing for the long time away from home..
Any questions anyone has that l should ask the experts????
I have one…why cannot NTM be caught from Welll water..? and if not….if the well water goes thru a refrigerator with a filter and then an ice maker….can the NTM be caught.
any more???
terrid
Merry Xmas…Happy Hanukah….Happy NEw year to all

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@katemn

@imeehaigt, Oh Imee! I am SO happy for you! What a wonderful day .. what wonderful news! Just continue to do your “due diligence” .. now that you have educated yourself .. you now know how to take good care of your body .. so IT can take good care of YOU! YEAH! Just continue to do what you know you should be doing .. DON’T let up! I am SO happy for you! The New Year will be a GOOD year for you! Sending you a hug! Katherine

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Great Imee! I’m happy for you. We hope for the best all the time and look at the bright side of life. Wishing you all a Blessed and Merry Christmas. With the coming of 20017 we need to leave all the worries of the critters on our lungs. Hopefully the New Year will bring Holiness, Happiness and healthy. Have you all in my prayer! cila.

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Wonderful thoughts.

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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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Hi, Everyone! I am new here. I found this forum a few days ago when Googling MAC, which I have been diagnosed with. I also have bronchiectasis (diagnosed in 2014 but also showed up in a previous 2008 CT scan but never addressed) but in addition to that, was diagnosed last December with Atypical Cystic Fibrosis. I took the genetic test and do not have the gene mutation but I do have the symptoms. I do a saline breathing treatment 2xday and use the Aerobika and get up anywhere from 2 – 3 tbsps. of mucus each time I do a treatment. I have a sporadic, typically dry cough unless I have some mucous floating around, in which case I have to clear that but that’s not always easy if I’m in public. I began my MAC treatment on 12/17, starting with the Azythromycin 250 mg. Today I begin the Ethambutol 1200 mgs and next week the Rifampin 300 mg. I’m blessed to have someone in my office who has Cystic Fibrosis and also have MAC (although I feel horrible feeling blessed from her illness). She has been able to help me and give me some advice on the meds. Just seeing her show up at work every day tells me there is hope for a “normal” life – even if it’s a new normal! This forum is amazing and am glad to have you all as I have learned so much in the first 11 pages! I am replying on your post, Sophie, as I am a prayer warrior and am surrounded by prayer warriors. I believe that is my first line of defense! I am completely dependent on my relationship with God to get me through this. I prayed over my medicine (as strange as that sounds!) and my Sunday School class laid hands on me and prayed over me for protection against the side effects. I will not let this disease become who I am but just an annoyance that I will deal with as needed. I have too much to do! I have stopped working out for a few weeks but will go back to it in the next month. I was having trouble breathing and felt like I wasn’t getting the full benefit of my workout. I look forward to reading the rest of the posts (8 more pages to go before I’m caught up!) and benefitting from the knowledge and experience from you all. Oh, BTW, I’m 65 yrs old, female and live in Phoenix, Arizona. I had pneumonia a couple of times in the 90’s and Valley Fever in 2008. This was all originally diagnosed as allergies after a persistent cough wouldn’t go away in the mid-90’s.

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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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I have been on the big “3” since july. At first my stomach hurt a lot, but now no problems. Make sure you get a hearing test and also keep your eyes checked as one of the meds can affect hearing/vision..

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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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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

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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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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.

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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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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

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

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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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I did that yesterday, thanks to this group!

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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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