(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

@irene5

@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.

Jump to this post

@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.

REPLY
@ktkarenst

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

Jump to this post

@ktkarenst Welcome to this site. You will find a wealth of info and meet many lovely and knowledgeable people. I will share with you that it is my understanding that MAC doesn’t have a cure yet. It may “go away” but frequently comes back. That is why the length of being on the meds is at least 18 months. God willing there will be a cure sooner than later.

REPLY
@windwalker

@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.

Jump to this post

@windwalker Sounds like a great plan Terri!

REPLY
@mariierod123

And the problem is the antibitics do t cure it its only temporary fix and it mess up other things so how do u get rid of it

Jump to this post

@mariierod123 Hi. As my doctor explained it to me: he is treating the bronchiectasis, NOT the mac. I am not, nor was I ever, on the big 3 antibiotics which can have adverse side effects. I have been on monthly antibiotics since 2013, and probably will be for life; without any side-effects. My Mayo dr said he has only seen a person 'cured' of mac after being on antibiotics for ten years, and even at that, only 30% of patients see that cure. I won't be one of them because my lung are far too damaged at this point from several lung diseases. Bronchiectasis is a structural lung disease. That is non-reversible, and the damaged lung tissue is susceptible to mac, pseudomonas, and many other bugs that can infect the lungs. That is the purpose of on-going prophalaxis (preventative) antibiotic use. The mac is difficult to get rid of because it has a protective membrane that doesn't allow the antibiotics to reach it's core. The antibiotics do however, thwarts it's reproduction. In other words, it keeps it from totally colonizing your lungs.

Liked by janovr

REPLY
@alleycatkate

@windwalker @ling123 …I just read today that FL is the highest MAC state. I wonder if it is because FL is a retirement destination and MAC is typically an older women's disease. Are we "importing" the MAC cases here in FL or "manufacturing" them? Hard to figure…but I would not consider moving unless my case got really bad. Terri..I agree with your thought about diet…food certainly impacts our health and makes us able to either fight off or succumb to diseases.

Jump to this post

@@@

REPLY
In reply to @janovr "@@@" + (show)
@janovr

I moved to Fl. but already had MAC. The two MAC ladies I have met here are also transplants, both from the North. I grew up in NC, but lived my adult life in Atlanta.

REPLY
@america

I came Florida 15 years ago from NY! I love this place but my husband wants to move because he thinks I’ll always be sick here. I don’t know what to do! My 5 kids all lives here and I love my grandkids so much. It will break my heart to leave them. I need help!!!!

Jump to this post

@america… I would not move. Your heart is here. I moved here to be closer to family. Love it, yes, I have bouts of illness, but mostly bronchieactiactis.
You could be just as sick in New York.

REPLY
@irene5

@america here is my opinion on that. We moved to Tennessee for many reasons, but our ten children and thirteen grand babies all live in Connecticut. I was physically sick with MAC in Tennessee, but the lack of a support system (family) took more of an emotional toll on me, and the MAC actually got worse. After a year we moved back. I am still sick, but my family is ever present. That support should never be taken for granted. Whenever the good God calls me home, I would rather be found where my family is hands down! I hope this experience helps put perspective on the correlation between physical and emotional wellness. Moving away taught my husband and me a very valuable life lesson. Good luck. (@irene5)

Jump to this post

@irene5 I totally agree with everything you stated!

Liked by america

REPLY
@megan123

Hi America…if it were me I would stay where u r and do the necessary things to stay healthy…baths, boil your water etc….the emotional component to this disease, I think is even more important…be happy💞

Jump to this post

AMEN!

REPLY
@windwalker

@spencersok, thank you for the prayers!

Jump to this post

@spencersok Thank youvfor🙏.

REPLY
@windwalker

@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.

Jump to this post

Thanks Terri!

REPLY
@ktkarenst

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

Jump to this post

@ktkarenst…You will find this a very receptive group to help with any of your concerns. I am sorry to hear that you are on your 'second go-round." I wondered too if you were diagnosed with bronchiectasis as Terri asked. Often the MAC & Bronchiectasis go hand in hand. I also wonder if you might do well with a second opinion after your upcoming appointment? I have very mild MAC and Bronchiectasis yet my 'second opinion' Dr thought that nebulizing a 6% saline solution would be helpful. (same Dr as Terri Windwalker) Since you say you can now feel it in your lung and could not before, perhaps the mucous is building up and nebulizing saline could be helpful for you. It seems to be just good lung hygiene to help thin and get the mucous up and out. (Important to hinder "bugs" from developing.) Wish I could offer more help and suggestions. Good luck to you and welcome to our very "exclusive" group. Kate

Liked by noahs

REPLY
@alleycatkate

@ling123 I totally agree with your view on sugar and white carbs. I too tend towards higher blood sugar levels (pre-diabetic) even when I do not eat sugar and very rarely eat white carbs and also limit fruits. I've found an Ayurvedic herb called Gymna Sylvestre taken daily brings my sugar levels down very well. I think we need to do all we can to stay as healthy as possible.

Jump to this post

@ling123 …Ooops…mispelled that herb in case you are interested….Gymnema Sylvestre. Sorry.

Liked by ling123

REPLY

If anyone is interested, there is a study called The WILLOW Study, on bronchiectasis treatment looking for candidates. If anyone wants to check it out or see if they qualify. Here is the link.
https://willowstudyportal.com/en-US/public?utm_source=bronchiectasisnewstoday%2CBRO%20E-mail%20List&utm_medium=pag%2Cemail&utm_campaign=5eafe06f4e-EMAIL_CAMPAIGN_2018_08_28_07_10_COPY_01&utm_term=0_d9df0e1c03-5eafe06f4e-71479961

REPLY
@ginak

If anyone is interested, there is a study called The WILLOW Study, on bronchiectasis treatment looking for candidates. If anyone wants to check it out or see if they qualify. Here is the link.
https://willowstudyportal.com/en-US/public?utm_source=bronchiectasisnewstoday%2CBRO%20E-mail%20List&utm_medium=pag%2Cemail&utm_campaign=5eafe06f4e-EMAIL_CAMPAIGN_2018_08_28_07_10_COPY_01&utm_term=0_d9df0e1c03-5eafe06f4e-71479961

Jump to this post

@migizii thanks for sending this…..I live too far away to consider even attempting to qualify but it would be interesting to hear what the study is looking for if someone decides to pursue it (I live in northern Minnesota).

REPLY
Please login or register to post a reply.