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!

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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:
- 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.

Katherine, Alumni Mentor | @katemn | Mar 2, 2017
In reply to @heathert "Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?..." + (show)
@heathert

Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?

FDA clears test to help manage antibiotic treatment for lower respiratory tract infections and sepsis
On February 23, 2017, FDA cleared the expanded use of the Vidas Brahms PCT Assay to help health care providers determine if antibiotic treatment should be started or stopped in patients with lower respiratory tract infections, such as community-acquired pneumonia, and stopped in patients with sepsis. This is the first test to use procalcitonin (PCT), a protein associated with the body’s response to a bacterial infection, as a biomarker to help make antibiotic management decisions in patients with these conditions.

“Unnecessary antibiotic use may contribute to the rise in antibiotic-resistant infections,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health at the FDA’s Center for Devices and Radiological Health. “This test may help clinicians make antibiotic treatment decisions.

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@heathert .. WOW! Heather .. this is really interesting!! My husband has actually had Sepsis TWICE!! Once as we were walking out the door at Mayo Clinic Rochester MN! It was so scary .. I had never ridden in an ambulance in my life before! This was an instance when my ability to be an Advocate took hold! I always carry a thermometer with me when I am with him .. the hospital had patients in the Emergency room lined up in the HALLWAYS waiting to be processed! People lined up at the Nurse's Station waiting to be spoken to. When I took my husband's temp and it was 101.5 .. AND he has CLL .. I marched right up to that Nurse's Station .. pushed in front of a Policeman (who was NOT very happy!) and said "My husband has CLL .. he has a temp of 101.5 .. you get him into a room RIGHT NOW and an IV antibiotic RIGHT NOW!!". I was NOT going to be denied!! I was SOOOO correct .. it turned out he had SEPSIS and could have died!!

Having had so many life experiences like this may be why I am SO big on being on being our OWN best advocates!

A link to this is: https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm543160.htm

Again Heather, thank you for this information! Hugs! Katherine

REPLY
heathert | @heathert | Mar 2, 2017
In reply to @heathert "Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?..." + (show)
@heathert

Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?

FDA clears test to help manage antibiotic treatment for lower respiratory tract infections and sepsis
On February 23, 2017, FDA cleared the expanded use of the Vidas Brahms PCT Assay to help health care providers determine if antibiotic treatment should be started or stopped in patients with lower respiratory tract infections, such as community-acquired pneumonia, and stopped in patients with sepsis. This is the first test to use procalcitonin (PCT), a protein associated with the body’s response to a bacterial infection, as a biomarker to help make antibiotic management decisions in patients with these conditions.

“Unnecessary antibiotic use may contribute to the rise in antibiotic-resistant infections,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health at the FDA’s Center for Devices and Radiological Health. “This test may help clinicians make antibiotic treatment decisions.

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oh wow @katenm this will be great for many people,good on you for getting to the front of the line, your hubby is very lucky having you advocate for him! How great that we may just need a blood test to test for this MAC now. I joined the FDA website and I get sent monthly info from them which is useful.

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heathert | @heathert | Mar 2, 2017
In reply to @lindam272 "Good morning, all! I just saw a reference to this book, Beating Brochiectasis: How I Went..." + (show)
@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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heathert | @heathert | Mar 2, 2017
In reply to @windwalker "Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller;..." + (show)
@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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Katherine, Alumni Mentor | @katemn | Mar 2, 2017

@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

REPLY
3 replies
Katherine, Alumni Mentor | @katemn | Mar 2, 2017

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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10 replies
Katherine, Alumni Mentor | @katemn | Mar 2, 2017

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

REPLY
2 replies
decosmo | @decosmo | Mar 2, 2017
In reply to @katemn "Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I..." + (show)
@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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heathert | @heathert | Mar 2, 2017

@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/

REPLY
4 replies
heathert | @heathert | Mar 2, 2017
In reply to @katemn "@heathert, Heather, in reading the article I was excited .. BUT we don't want to put..." + (show)
@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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