(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!

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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:
- 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.

ktkarenst | @ktkarenst | Mar 12, 2019

In reply to @windwalker "@jasmine321 and @spencersok, We can all commiserate with Spencersok's wife. But, I want to remind everybody..." + (show)

I hope I'm not butting into a conversation that I shouldn't. I too, have MAC. This is my second go-round. I was first diagnosed in June of 2017. I took the standard 3 antibiotics for a period of 12 months and was told I was cured. When I went in for my yearly check up, my Dr. ordered a CT and it showed up in the scan. I had a Alveola Lavage and will see my dr. on the 20th for formal diagnosis. From what I'm reading, it doesn't sound very promising. This second time is so different than from the first. I can really feel it this time. I'm so sorry you all are having to go thru this. If anyone has any suggestions, I would love to hear them.
Again, this is my first attempt to join this group and I'm not sure of how to get started, and I'm sorry if I shouldn't have responded here.
ktkarenst

Terri Martin, Volunteer Mentor | @windwalker | Mar 12, 2019

In reply to @america "Thanks Irene5! Family means a lot to me and I know it the hardest thing to..." + (show)

@america That was great advice from Irene and Jennifer. I am thriving where I live right now, but it could also be due to the great care I got at Mayo. I get the being near family thing. I miss my daughter so much that it consumes me (she lives in Virginia). As part of our down-sizing plan, I am including extended stays up in Virginia to spend more time with my daughter. I will leave there in the winters and go south again to our much smaller home. I cannot bear the damp cold winters up there. That dampness goes right to my lungs and I get sick. We have to follow our hearts on what is best for us.

Terri Martin, Volunteer Mentor | @windwalker | Mar 12, 2019

In reply to @ktkarenst "I hope I'm not butting into a conversation that I shouldn't. I too, have MAC. This..." + (show)

@ktkarenst, Hi there. You absolutely are not butting in! This is an open forum platform. Everyone's input is welcomed. I am sorry to hear your mac is not testing negative any longer. Usually drs keep patients of mac on those three drugs for 18 months or longer. I have tested negative for mac since 2014, but still take antibiotics monthly. Granted, they are not the same ones you have been taking. You can click on my picture icon and my treatment plan will come up for you to read. Do you know if you also have bronchiectasis?

ktkarenst | @ktkarenst | Mar 12, 2019

My Dr. hasn't mentioned bronchiectasis yet. I live in Fort Smith, Ar. and I'm seeing the only lung dr. here under my insurance plan. When I go back to see him on the 20th, I should know more. If you don't mind, I will read your treatment plan and give it to my dr.

irene5 Irene Estes | @irene5 | Mar 12, 2019

In reply to @spencersok "@jasmine321 and @irene5 I don't think my wife will entertain the thought of surgery. She is..." + (show)

@spencersok

@jasmine321 and @irene5 I don't think my wife will entertain the thought of surgery. She is 72 years old and a recipient of a Liver Transplant. She taking antirejection meds now to preclude the liver rejection, yes after 17 years. As we all goes the suffering, there is somethings that drugs will not cure, but for those who believe, we pray that God will fill the "gap" through his healing power. Many don't realize the day we were born, we begun to die, but the last breathe is in God hand and timing. So my suggestion is that we live while we are living and death will take care of itself.

The Bible, not meaning to offend anyone, tells us that we are to be of good courage: "So we are always of good courage. We know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight. Yes, we are of good courage, and we would rather be away from the body and at home with the Lord."

Even though my wife is the one who is physically suffering from this monster of disease, as a supporter of her needs, I suffer too. We all wonder how we should respond to the pain and suffering? After all these years my wife been ailing, that not an easy answer, we will face the situation or circumstance differently, but we have one thing in common; The God that heals. One would wondered if he is the God that heals, then why are you healed. That answer is just as complicated as the other. but life is about timing. Yet while we pray, we must attend to a critical distinction; although God can heal us, we must never presume that he must. You see, death is the consequence of the fall. "For we all have sinned and fall short of the Glory of God." Therefore, "For the wages of sin is death, but the gift of God is eternal life in Christ Jesus Our Lord.". Death itself will overtake us all, and most commonly recruits illness as it vehicle. to bring us to that point. When Christ returns, no disease will blot God's creation, but for now, we wait and groan as our bodies wither.

We would like to percieve our healing to be for the greater good, but God's wisdom surpasses even the most impressive reaches of our understanding. We cannot bend God's will to resemble that of our own. May I leave you with this thoought. If we set our eyes only on a cure, rther than on the reality of our physical mortality, we ay chase after treatments that not only fail to save us, but which also rob us of our capacties to think, communicate, and pray in our final days. On other thing we forget. We made ourselves not and if healing is not within God's will, we will need fortuide, peace, and discernment to endure. and if healing doen't come, a single-minded focus on healing strands ourselves and those we love with unsettling doubts about the validity of prayer and our faith.

No matter the belief level of whoever might read this, I will continue to pray; we are to pray without ceasing. As I pen this note to all right now, no matter which side of the world you reside, you see, God is watching over us. He said it this way, "Get some rest. It's in my hands and I am able to do immeasurably more than you can ever imagine."

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@spencersok Amen! I have a dear artist friend who lives at Hampton Beach. She sends me beautiful sunrises and sunsets to remind me to trust God with the “big picture” that we are not privy to and also to remind me of the beauty of God’s handiwork. I too pray without ceasing. Suffering is part of living. But, admittedly, I have joked with God that I don’t mind pain - as long as it doesn’t hurt! And I seriously don’t like that there is so much suffering in this world! I have lots of questions for Him! I agree with your thoughts/comments . You are definitely a mighty man of God! God bless you both real well. Someday, we will have the answers we seek. Until then I continue to trust Him.

Terri Martin, Volunteer Mentor | @windwalker | Mar 12, 2019

In reply to @ktkarenst "My Dr. hasn't mentioned bronchiectasis yet. I live in Fort Smith, Ar. and I'm seeing the..." + (show)

@ktkarenst, Be sure to ask him about whether or not you have bronchiectasis, and if maybe you have GERD or acid reflux. These are two common culprits for attracting mac disease. Your CT scan is what can reveal bronchiectasis. Please take the time to read over older posts as there is a lot of info in our conversations. Check out the Discussion board too, there are pages and pages of helpful topics concerning this disease. It is located on the main Mac and Bronchiectasis home page. Let me know if you need help navigating this site, ok?

ktkarenst | @ktkarenst | Mar 12, 2019

In reply to @windwalker "@ktkarenst, Be sure to ask him about whether or not you have bronchiectasis, and if maybe..." + (show)

I do have Gerd and have been taking meds for that for years. I may be asking you for help. I am slow at getting around in here but I'm getting more used to it. Thank you so much. I feel better just knowing I'm not alone. Thanks again, and have a good evening.

irene5 Irene Estes | @irene5 | Mar 12, 2019

In reply to @windwalker "@jasmine321 and @spencersok, We can all commiserate with Spencersok's wife. But, I want to remind everybody..." + (show)

@windwalker Yes, Terri that is so true about MAC and transplants and anti rejection drugs. Before I retired I had a little girl in my class with two transplants (kidney and liver). Most of us on this site are lucky to be able to use hand sanitizer before we eat at a restaurant. Transplant patients can’t use it as it can damage the transplants apparently. That was new info for me! The doctors at Boston Children’s Hospital told the little girl’s mom that so her IA stopped having her use it.

Terri Martin, Volunteer Mentor | @windwalker | Mar 12, 2019

In reply to @ktkarenst "I do have Gerd and have been taking meds for that for years. I may be..." + (show)

@ktkarenst Don't worry, you will get there( learning your way around this site). It has taken me yrs to figure out some of the ins and outs of using this site. Plus, thanks to our 'Moderators'; they have taught me a lot on how to navigate around on it. Here is one helpful hint: you can scroll up to the top of this page and click on the magnifying glass icon. A box will appear and you can type in key words like 'gerd', 'acid reflux', or emthambutol, etc. and past conversations about these topics will come up. then, you can click on each and read them.

Terri Martin, Volunteer Mentor | @windwalker | Mar 12, 2019

In reply to @irene5 "@windwalker Yes, Terri that is so true about MAC and transplants and anti rejection drugs. Before..." + (show)

@irene5 Wow! Good to know that. I had never heard that, or read that either for that matter. That tidbit was not in the post lung transplant literature I was given in 2016.

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