1. < MAC & Bronchiectasis

(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

lindam272 | @lindam272 | Jan 6, 2017
In reply to @lindam272 "Marie - I just joined this forum also and live in Arizona so can't help from..." + (show)
@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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lindam272 | @lindam272 | Jan 6, 2017
In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)
@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

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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Katherine, Alumni Mentor | @katemn | Jan 6, 2017

@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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5 replies
judyem | @judyem | Jan 6, 2017
In reply to @katemn "@sophie1019 Hi Sophie, if it is ok with you I will share the apps of color..." + (show)
@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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Katherine, Alumni Mentor | @katemn | Jan 6, 2017

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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47 replies
Katherine, Alumni Mentor | @katemn | Jan 6, 2017
In reply to @katemn "@sophie1019 Hi Sophie, if it is ok with you I will share the apps of color..." + (show)
@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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@sophie1019 Sophie See the post from Judy below .. is there an actual name for those apps? Actual names would be helpful! Thank you so much! Katherine

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Katherine, Alumni Mentor | @katemn | Jan 6, 2017

@pfists So glad you found our Forum, you have had a tough time of it! You are SO lucky to have gotten an appointment with Dr. Aksamit at Mayo Clinic .. he is just wonderful .. you are going to love him .. you will be in good hands! I also had MAC abscesses and Bronchiectasis .. he will know just what to do! I would encourage you to read the past pages of our Forum .. you will learn SO much about our shared disease .. meet some really wonderful and supportive people! We are all this same shared journey together. Hugs to you! Katherine

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5 replies
Katherine, Alumni Mentor | @katemn | Jan 6, 2017
In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)
@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

@lindam272 Linda, that is good info .. IPhone? I have Android .. I just went to the PlayStore for apps .. put in color blindness .. got MANY .. but what interested me were the one with a NUMBER in a MULTI DOTTED background circle. That is EXACTLY the test I was given at the doctor's office! So thanks for the info! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 6, 2017
In reply to @lindam272 "Marie - I just joined this forum also and live in Arizona so can't help from..." + (show)
@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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@lindam272 Linda, SO glad you're doing so well! LOVE your great attitude .. you go girl!

Now I can ONLY speak for myself .. but I found Rifampin REALLY interfered with my sleep .. so I started taking it first thing in the morning .. that really helped! Plus interestingly enough .. when I went off the antibiotics .. the funny leg issues during sleep stopped! It was just a weird feeling .. hard to describe .. but it stopped once I stopped the Rifampin. Funny how each of our bodies react differently!

If you read past posts .. I have found help with sleep using one tab of "Twin Labs 400mg Magnesium" .. had to order it online but that seems to help .. read about it somewhere .. seems to help me. I prefer more natural things if possible .. don't want to do sleeping pills!
So keep us posted on your progress .. sending you a hug! Katherine

REPLY
Kay Strand | @kaystrand | Jan 6, 2017
In reply to @lindam272 "Marie - I just joined this forum also and live in Arizona so can't help from..." + (show)
@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

Jump to this post

Rifampin definitely caused sleep problems for me. I take in in AM on an empty stomach for good absorption. It causes red urine, stools even sweatbin some folks. I also think that it caused nausea, but at 3 weeks I got better. I've never been 100% on the big 3, but I'm getting by much better.

Kay S

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