(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

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@lindam272

Good morning, all! I just saw a reference to this book, Beating Brochiectasis: How I Went From Diagnosis to Full Recovery in Just One Year by Daniel Pecaut in the Bronchiectasis News Today and ordered it. For $4, it’s worth it if I just read one thing that makes my life a little easier. Thought I would share with you all in case you have any interest as well. https://www.amazon.com/Beating-Bronchiectasis-Went-Diagnosis-Recovery/dp/0998406201/ref=sr_1_1?s=books&ie=UTF8&qid=1488470221&sr=1-1&keywords=pecaut
Blessings on your day! Linda

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thanks @lindam272, I have just ordered from amazon. Please let us know how you get on.

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@windwalker

Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller; he is the one that did my first & only blood gas test. I was dreading it, but it was totally painless! (because he is the best!) I pray that I can hold on to my original lungs long enough to see the day they use stem cell regenerated lungs. Less chance of rejection issues. hope this day finds you well Katherine. Hugs! Terri M.

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hi @windwalker, I hope the stem cell treatment isnt too far away, does anybody know what stage they are up to with this? Might have to investigate.

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@heathert, Heather, in reading the article I was excited .. BUT we don’t want to put the horse before the cart! I read:
The Vidas Brahms test is intended to be used in the hospital or emergency room. Risks associated with use of the test may include false positive results, which may lead to unnecessary treatment with antibiotics, and false negative results, which may lead to a delay in the selection of appropriate therapy.

Because of this .. I see Dr. Aksamit March 7 .. I will TRY to “slip” this question into the appt .. WILL the Vidas Brahms test be used in diagnosing MAC .. or ONLY in “hospital or emergency room”. I will post if I get an answer. We need to get a definitive answer before we get too excited .. but it sure is nice to know there is ongoing research for our bacterial diseases! Hugs! Katherine

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Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I ordered a 2nd Aerobika from a medical supply company after being concerned that I had to place the dial at the maximum level to create enough resistance/ “huff coughing” to be effective. Well I received the 2nd Aerobika .. cleaned it carefully as I had the one from Ebay. Then I traded off from one to the other in “huff coughing” to see what difference I could find. If I am 100% honest I just couldn’t find much difference .. at MOST the difference might be in favor of the medical supply Aerobika of perhaps 5 to 10% greater resistance. If I were to GUESS .. the medical supply one came with a bit more fancy hand outs .. but the EBAY came with the proper full Aerobika Instructions for Use .. so MAYBE Ebay gets “Returns” that are just fine but Medical Supply companies can’t resell???? So frankly if money is a BIG issue for someone .. if you Private Message me .. I will share with you the Ebay vendor I purchased mine from. BUT if not .. I would purchase your Aerobika from a medical supply just to be safe! (also .. I am HOPING that the fact I must put the dial at the Maximum means my lungs are pretty darn decent??)
Hugs! Katherine

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Dear All.. wanted to share a tip with you in case you might need it. I was traveling to an area that had TERRIBLE POLLUTION ( equivalent to smoking a pack of cigarettes per day!) I was very aware of various masks including the 3M N95 but did my “due diligence” and found this (I got a kinda cute one!):

http://www.cambridgemask.com/buy-a-mask/international/ Where I purchase mine .. bought two of them .. shipped from the UK .. was SO happy with them. Very easy to breathe through .. in fact on the plane home was across from a woman with a TERRIBLE cough .. so I wore mine the whole way home and did NOT catch her cold! So I would highly recommend this mask to anyone of us with our poor immune systems. I have since CAREFULLY washed one of mine (did not even use the 2nd one) .. let it air dry and it is ready for use again.

I have SINCE found it at good old Amazon .. just can’t believe it .. you can find ANYTHING at Amazon .. did not even look on Amazon at the time I purchased!! Hope this helps someone! Hugs! Katherine
https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab

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@katemn

Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I ordered a 2nd Aerobika from a medical supply company after being concerned that I had to place the dial at the maximum level to create enough resistance/ “huff coughing” to be effective. Well I received the 2nd Aerobika .. cleaned it carefully as I had the one from Ebay. Then I traded off from one to the other in “huff coughing” to see what difference I could find. If I am 100% honest I just couldn’t find much difference .. at MOST the difference might be in favor of the medical supply Aerobika of perhaps 5 to 10% greater resistance. If I were to GUESS .. the medical supply one came with a bit more fancy hand outs .. but the EBAY came with the proper full Aerobika Instructions for Use .. so MAYBE Ebay gets “Returns” that are just fine but Medical Supply companies can’t resell???? So frankly if money is a BIG issue for someone .. if you Private Message me .. I will share with you the Ebay vendor I purchased mine from. BUT if not .. I would purchase your Aerobika from a medical supply just to be safe! (also .. I am HOPING that the fact I must put the dial at the Maximum means my lungs are pretty darn decent??)
Hugs! Katherine

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Thank you for Katherine. Dr. Leventhal approved my using the Aerobika so I will purchase and cross my fingers it will prove useful. Rosie

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@windwalker I found this article, it states that Thailand is doing lung stem cell treatment already, there are probably other countries also. I hope this is legitimate.
https://stemcellthailand.org/therapies/copd-chronic-obstructive-pulmonary-disease/

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@katemn

@heathert, Heather, in reading the article I was excited .. BUT we don’t want to put the horse before the cart! I read:
The Vidas Brahms test is intended to be used in the hospital or emergency room. Risks associated with use of the test may include false positive results, which may lead to unnecessary treatment with antibiotics, and false negative results, which may lead to a delay in the selection of appropriate therapy.

Because of this .. I see Dr. Aksamit March 7 .. I will TRY to “slip” this question into the appt .. WILL the Vidas Brahms test be used in diagnosing MAC .. or ONLY in “hospital or emergency room”. I will post if I get an answer. We need to get a definitive answer before we get too excited .. but it sure is nice to know there is ongoing research for our bacterial diseases! Hugs! Katherine

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@katemn please let us know what Dr Askmit thinks about it.

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@katemn

@heathert, Heather, in reading the article I was excited .. BUT we don’t want to put the horse before the cart! I read:
The Vidas Brahms test is intended to be used in the hospital or emergency room. Risks associated with use of the test may include false positive results, which may lead to unnecessary treatment with antibiotics, and false negative results, which may lead to a delay in the selection of appropriate therapy.

Because of this .. I see Dr. Aksamit March 7 .. I will TRY to “slip” this question into the appt .. WILL the Vidas Brahms test be used in diagnosing MAC .. or ONLY in “hospital or emergency room”. I will post if I get an answer. We need to get a definitive answer before we get too excited .. but it sure is nice to know there is ongoing research for our bacterial diseases! Hugs! Katherine

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@heathert, Heather .. will do! I am HOPING he says YES!! Wouldn’t that be just great .. but truthfully after a careful reading it appears more for emergency rooms for sepsis etc .. like with my husband’s case .. but I am STILL hoping! Hugs! Katherine

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@katemn

Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I ordered a 2nd Aerobika from a medical supply company after being concerned that I had to place the dial at the maximum level to create enough resistance/ “huff coughing” to be effective. Well I received the 2nd Aerobika .. cleaned it carefully as I had the one from Ebay. Then I traded off from one to the other in “huff coughing” to see what difference I could find. If I am 100% honest I just couldn’t find much difference .. at MOST the difference might be in favor of the medical supply Aerobika of perhaps 5 to 10% greater resistance. If I were to GUESS .. the medical supply one came with a bit more fancy hand outs .. but the EBAY came with the proper full Aerobika Instructions for Use .. so MAYBE Ebay gets “Returns” that are just fine but Medical Supply companies can’t resell???? So frankly if money is a BIG issue for someone .. if you Private Message me .. I will share with you the Ebay vendor I purchased mine from. BUT if not .. I would purchase your Aerobika from a medical supply just to be safe! (also .. I am HOPING that the fact I must put the dial at the Maximum means my lungs are pretty darn decent??)
Hugs! Katherine

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@decosmo, Rosie, I will be shocked out of my mind if the Aerobika doesn’t help you!

Which is the best Airway Clearance method for Cystic Fibrosis? https://www.youtube.com/watch?v=Wn5o5AgD9m0

In it he talks about all the various devices that are helpful .. how to use them .. AND his favorite. After watching this video I now know I am wasting my time doing what I always thought was my “lung hygiene” FIRST .. THEN going to my Aerobika to get up MORE sputum! What a waste of time and energy! I need to go right from my 2 inhalers DIRECTLY to the Aerobika for the most effective “lung hygiene”! Man, we learn something new every day! Plus I learned .. since I am using the Aerobika at the max setting .. it might be smart for me to also have the RC Coronet which is a bit more demanding. I think I am going to order it today. I could switch off between the Aerobika or the Cornet depending on how much pressure I feel I need that day! Check out the video .. interesting info! Hugs! Katherine

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@katemn

Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I ordered a 2nd Aerobika from a medical supply company after being concerned that I had to place the dial at the maximum level to create enough resistance/ “huff coughing” to be effective. Well I received the 2nd Aerobika .. cleaned it carefully as I had the one from Ebay. Then I traded off from one to the other in “huff coughing” to see what difference I could find. If I am 100% honest I just couldn’t find much difference .. at MOST the difference might be in favor of the medical supply Aerobika of perhaps 5 to 10% greater resistance. If I were to GUESS .. the medical supply one came with a bit more fancy hand outs .. but the EBAY came with the proper full Aerobika Instructions for Use .. so MAYBE Ebay gets “Returns” that are just fine but Medical Supply companies can’t resell???? So frankly if money is a BIG issue for someone .. if you Private Message me .. I will share with you the Ebay vendor I purchased mine from. BUT if not .. I would purchase your Aerobika from a medical supply just to be safe! (also .. I am HOPING that the fact I must put the dial at the Maximum means my lungs are pretty darn decent??)
Hugs! Katherine

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Thank you Katherine. Watched the video informative and educational. Dr. Leventhal also suggested either the acapella or the aerobika. I was reading the contraindications and saw sinitus on the list. Hmmm, wonder if it will cause me issues. Another question for Dr. Leventhal. I am sure he is getting frustrated by now of my asking his staff to answer questions. LOL

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@katemn

Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I ordered a 2nd Aerobika from a medical supply company after being concerned that I had to place the dial at the maximum level to create enough resistance/ “huff coughing” to be effective. Well I received the 2nd Aerobika .. cleaned it carefully as I had the one from Ebay. Then I traded off from one to the other in “huff coughing” to see what difference I could find. If I am 100% honest I just couldn’t find much difference .. at MOST the difference might be in favor of the medical supply Aerobika of perhaps 5 to 10% greater resistance. If I were to GUESS .. the medical supply one came with a bit more fancy hand outs .. but the EBAY came with the proper full Aerobika Instructions for Use .. so MAYBE Ebay gets “Returns” that are just fine but Medical Supply companies can’t resell???? So frankly if money is a BIG issue for someone .. if you Private Message me .. I will share with you the Ebay vendor I purchased mine from. BUT if not .. I would purchase your Aerobika from a medical supply just to be safe! (also .. I am HOPING that the fact I must put the dial at the Maximum means my lungs are pretty darn decent??)
Hugs! Katherine

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@decosmo, Rosie, I would definitely do the Aerobika .. at least for me the Acapella did zero! Just my opinion. The Acapella has the dial feature so you have so many more options. Hugs! Katherine

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