(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

@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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this is indeed very interesting…and helpful.   I have been wondering just how effective the plain paper masks really are… this is great information – thank you!  Pam   

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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Katherine  –  your comments about inhalers is very interesting and something I had never considered about my own "lung hygiene".  I use an inhaler twice a day, not because it does anything in particular, but because my doctor said it was important to use as a preventative.  It is Symbicort.  You mention two others which you say are important because they make you cough up the yellow sputum, versus clear sputum.  The Symbicort does make me cough a bit just after I take it, but it does not make me cough up sputum.  I am now wondering if I should change inhalers and use what you use so that I do cough up the stuff that can make my lungs feel tight.  I will discuss this with my doctor.  I have not heard of Atrovent or Qvar, but I will do some research on them and see how they are different.   It makes me realize that the actual product our doctors tell us to use can vary and that one should be vigilant in understanding options.  I am very glad you brought up these issues of inhalers.  I also have on hand the inhaler Proair, and I was told only to use that when I feel I am not getting enough air – to use it as a "rescue inhaler".  When I could not breathe well in Idaho due to the altitude, I took two puffs and that did provide relief… but I was told only to use it every 4 to 6 hours.   Are there other inhalers out there that serve as rescue inhalers that might be any better?   I just want to know that I have the right product on hand!    Thank you, Pamela  

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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I have Proair as a rescue inhaler and Breo as a once daily. They have worked very well for me Pamela. Irene

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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thanks Irene – I will ask about Breo as well.  Pamela   

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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Katherine, thank you for your encouraging words. I was also prescribed saline nebulizer treatments twice a day. Found it very abrasive twice a day and I don’t cough up any sputum. I have what is known as dry bronchiectasis. Most of my phlegm is from my sinuses and I use saline sprays every day. I thought Symbicort was to help open the airways? I do worry about mucus building up in my lungs since it’s hard for me to cough up mucus and sputum. It’s a journey my new found friend. I love these forums because we get to share our experiences and perhaps get new insights on how to journey on with these illnesses. Do you know if Atrovent or Qvar are milk laced?
Rosie

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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Hi Pamela , My understanding is that the symbicort is to open the airways. The saline nebulizers help with making you cough up sputum. I find it very irritating so my doctor told me to cut down on the amount. I don’t use every day because I feel worse when I use every day. What are you finding are the benefits to using Symbicort? Have you experienced any side effects?

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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@melrosedecosmo, Rosie, we are ALL learning from each other! I googled ‘are Atrovent or Qvar milk based’ and didn’t come up with a good answer. This would be a good question to ask of your local pharmacist . they are a GREAT resource! I call them all the time! Check it out and share with us! Hugs! Katherine

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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Will do Katherine. This is how I found out I could not use Breo,checked with the pharmacist. I am lactose intolerant. Sounds like you do your research also! Have a great weekend. Rosie

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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I have bronchiectasis and have also been diagnosed with atypical cystic fibrosis and now, of course, MAC. My CF doc has me using the nebulizer twice a day. I take a couple puffs of albuterol before my treatments. The saline loosens and thins the mucous so you can get it up easier. The albuterol opens the airways which is why I use that first. Initially, I was given Symbicort for my inhaler but it caused my voice to change (I could barely talk) and I totally felt like I was suffocating. It affected me in many ways, all bad. I was put on a steroid to counteract the affects and changed to the albuterol or Proair. I do much better with those. They are supposed to last 4 hours. The Aerobika is also supposed to loosen the mucous in the lungs. I use that after my saline treatment. Linda

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@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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Pam, I now use an Ionic Personal Air Purifier called the Minimate when I fly. I found a link for it on this site and ordered it off Amazon. I think it was around $50. I wore it last week when I flew to LA. It doesn’t make a sound and seemed to work well. You wear it like a necklace or clip it to your clothes. I will use it in other areas where there are crowds as well. I also used Halo. That was a tip from Katherine, I believe. And always take Airborne. That works really well for me. Linda

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@katemn

Posted by @pfists, 10 hours ago
Do you use water in the diffuser with the oils
I heard that tap water wasn’t safe to put in humidifier/diffuse so wondered if you need to use water with the oil.
I use thieves oil also on bottoms of my feet.
Thanks
Shari

@pfists, Shari, personally I would use distilled water. Research has not ruled out mycobacterium NOT being breathed into our lungs from water .. like from hot tubs. Best to be safe! Hope this helps. Hugs! Katherine

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I listened to a webinar by a MAC doctor – link found somewhere in these pages – and in the webinar the doctor indicated that anyone with MAC should never use a humidifier. Not sure that it would hurt with oil, but I would never use one with any kind of water. Linda

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Hi Y’all!
Been following nebulizer talk. I’m prescribed neb. 3 times a day with two drugs- albuterol and budesonide. I don’t get up any phelm after but do get some about 4 times a day. I don’t think I have dry bronchiectasis as I’m coughing up phelm at times. But I’m also not getting any phelm after using my aerobika device. Is there a connnection between how much sputum and how clear your lungs are?
Hugs from David

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@david1952, Hi David, I really think this might be a question to ask your Pulmonologist. I also have Bronchiectasis .. AND I know that is known for sputum production AND important to get the sputum up .. but if you ONLY have MAC I STILL found ‘It is associated with excessive mucous production that results in coughing and small to copious amounts of sputum’ http://www.maclungdisease.org/frequently-asked-questions

SO since each of our bodies are so different .. I think this question is one for your own doctor who knows ALL your medical info. Hope that helps! Hugs! Katherine

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Calling EVERYONE .. and especially newer members .. @sophie1019 and @kaystrand .. please reach out to @dianelobosco .. she is new and SO scared .. you well know how scary it is in the beginning .. you would be WONDERFUL help in her beginning journey with your positive spirit and gumptions! Hugs to you all! Katherine

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@dianelobosco .. Hello .. may I call you Diane? SO glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! PLEASE do not be so afraid! We ALL have been down this road .. we will be with you hand in hand now .. through out this journey of yours .. our SHARED journey .. we have ALL been down this SAME road as you have now started. We ALL were scared like you are right now.
BUT you will find IF as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. ask any questions you have .. we will be here for you .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine

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