(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

@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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@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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@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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@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, 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

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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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@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

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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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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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@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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Kay, thanks for jumping in to help @lindam272 Linda! That is really good info! If people are not warned about the “red” .. it can be disconcerting! WHAT!! is going on?!

Plus I just looked back on my notes: RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID. Since I have been on Synthroid since my 40’s .. that was important info for me.

Also found: Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Take this medicine on an empty stomach, either 1 hour before or 2 hours after food.

Hope this helps Linda! Hugs to you both! 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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Thanks Katherine for following up on this! Any additional information would be helpful!

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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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I’m looking for advice from the group about nausea. I’ve had MAC for 5 months and am taking the BIG THree meds (Rifampin, Ethambutol and Clarithromycin) I’ve lost 12 pounds because of nausea and lack of appetite. I’m down to 133 pounds (I was six foot three and thin even before MAC). My pulmonologist told me to try perscription drug Ondasetron for nausea, but it doesn’ seem to help. Any other ideas?
David

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Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Good Morning, @128128terry11t, and Welcome to the Connect community. I know that you will receive lots of support from many of our members – our Lung discussion group has been a very active and supportive one.
I am not experienced in lung health, but as far as your new medicine reactions, I know that all of us can have a variety of respo0nses to different medicines. “Tweaking” under your doctor’s supervision is often necessary. And the fact that you were told that tweaking might be necessary, is a perfect reason to make a call to your doctor, or your pharmacy. It is possible that the timing of your doses, or before/after meals , or dosage adjustment might be helpful. I hope you feel better soon! Rosemary

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Hello @128128terry11t,

Welcome to Connect. I am so glad you found us, and I want to assure you that you have come to the right place for support, information, and good wishes.

We have a large MAC/MAI community, so you may wish to start by viewing past messages and discussions here: http://mayocl.in/2cwX36M

In the meantime, please meet @david1952, @lindam272, @krz4ua, @josephene, @laneyk, @imeehaigt, @kaystrand, @tdrell, @dianeray, @jilligirl, @liliane, @chinasmom, who will definitely have more insight for you.

And last but not least I would like to introduce you to one of our wonderful Mentors, @katemn; you are in good hands now!

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Hi @128128terry11t,

I would also encourage you to view these videos from National Jewish Health (2015 and 2016): https://www.nationaljewish.org/ntmvideos2016

You will find another great ongoing discussion on Connect (NTM/MAC/MAI: We must advocate for ourselves), here:
http://mayocl.in/2i0OkPw

@128128terry11t, may I ask what led to your diagnosis?

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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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Judy – The app that I have on my smart phone and the one Katherine is referring to is called Are You Color Blind? by James Kwan. If you go to the App Store on your phone and search “color blind” you should get that among others that are available. Linda

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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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So, this is what my schedule looks like right now. Up at 6:30 / 7am – probiotic / 8am Azithromycin and breakfast / 10am first Rifampin w/full glass of water (just starting today 1/7) / 12:00 First Ethambutol with light lunch / 2pm Second Rifampin w/full glass of water / 4pm second Ethambutol w/snack / 6pm Third Ethambutol w/light dinner / 8pm probiotic on empty stomach. I figure I will take my vitamins when I wake up in the middle of the night because I can’t figure out how to take them with this schedule. The woman in my office who is also fighting this disease says she doesn’t take 2 of anything at the same time so I’m following her example which has helped so far. Any feedback would be appreciated. Linda

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