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.

anniepie | @anniepie | Mar 16, 2021
In reply to @heathert "@anniepie, I never had problems with Arikayce and I am not on Lamira. Maby ask your..." + (show)
@heathert

@anniepie, I never had problems with Arikayce and I am not on Lamira. Maby ask your specialist about it, to see if he thinks it is necessary to have someone around or maby you could have your first dose at your Dr s office and stay for a few hours, otherwise ask a friend to stay the night. It is great stuff and worth it. Let me know how you get on. All the best Heather

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Thanks Heather @heathert. As I said to Irene, I got wobbly on this one when I looked at the video and website. All the serious but 'common' side effects they hit you with repeatedly on the website and video freaked me out.
It's hard to manage all this on my own without anyone around to help me -- and it gets to me sometimes. I just felt overwhelmed by it.
Thanks again for all your help and kindness.
I've now applied to get a personal medical alarm to wear, etc. I see the lung doctor at the end of March and will talk more about it with her. (I wish my situation had been properly taken into account instead of a staff member just lumping me with the machine, the drug and the name of a website to view a video on!). I hope I also have the personal medical alarm set up by then.
Hugs from Annie x

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heathert | @heathert | Mar 16, 2021

@anniepie yes they always mention so many side effects for everything which is scary,makes me quite anxious. It must be difficult on your own, I feel for you. A medical alarm is a great idea, just to know you have support if you need it. These drs never really go into our situations or explain things much, not good, and of course we cannot get hold of them after 5pm,, Most people I know had very few (not bad) side effects, but pays to be careful. Are you going onto Arikayce when you get the alarm. Hugs Heather

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2 replies
jr2366 (Jennifer) | @jr2366 | Mar 16, 2021

I’m on arilkayce myself most of us on it lose their voice most likely the first week or so just know it will come back but gargle with warm water and salt after each use that helps and lozenges also help as well I e been on Arikayce for 3 months now

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anniepie | @anniepie | Mar 19, 2021
In reply to @heathert "@anniepie yes they always mention so many side effects for everything which is scary,makes me quite..." + (show)
@heathert

@anniepie yes they always mention so many side effects for everything which is scary,makes me quite anxious. It must be difficult on your own, I feel for you. A medical alarm is a great idea, just to know you have support if you need it. These drs never really go into our situations or explain things much, not good, and of course we cannot get hold of them after 5pm,, Most people I know had very few (not bad) side effects, but pays to be careful. Are you going onto Arikayce when you get the alarm. Hugs Heather

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Thanks Heather @heathert, Yes I'm working up to it, when I've got the alarm.
Hugs from Annie

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Apr 11, 2021
In reply to @bschaper2 "I have another question. Someone here said don't drink tap water, drink spring water. Why not..." + (show)
@bschaper2

I have another question. Someone here said don't drink tap water, drink spring water. Why not purified water? And I use distilled water in my Keurig - is that ok? Thanks you - Barb

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Hello All, I purchased a LifeStraw liter water bottle and drink my RO water through that. I will leave the link below. Also, make sure you check the "Spring Water" to make sure that it is not just purified tap water. Sometimes it is. I do boil my drinking water at a rolling boil for one minute then let it cool and place it in a dispenser. That is also what I put into my LifeStraw bottle. For those who may be interested: https://www.amazon.com/gp/product/B089QVY8B4/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1

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1 reply
saaa | @saaa | Apr 11, 2021
In reply to @katemn "I was told no .. BUT I always felt that my lungs were weakened by a..." + (show)
@katemn

I was told no .. BUT I always felt that my lungs were weakened by a serious bout with pneumonia in 2003. I was seriously ill for three months .. put on five rounds of antibiotics .. 3 rounds of steroids by my internist. NOT ONCE was my sputum cultured to see which antibiotic was effective against whatever bacteria was affecting me! At that point I was not educated to the point of DEMANDING a culture .. too little to late. I was SO ill! Finally was diagnosed with MAI/MAC in 2007 via a sputum culture.

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Em 2014, após uma biopse com lavado brônquico, fui diagnosticada com MAI/MAC e tomei Rifampicina, Azitromicina e Etambutol, por quase 3 anos. A bactéria recidivou, passei a Claritromicina, Etambutol e Rifampicina, por mais 2 anos, melhorei, Agora recidivou novamente azitromicina, Etambutol, Rifampicina e amicacina (EV 3 x na semana). Vamos ver no que dá. Qual é o profissional que verdadeiramente conhece este assunto? Alguem aqui no grupo já se curou? e com o quê?

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2 replies
anniepie | @anniepie | Apr 12, 2021
In reply to @saaa "Em 2014, após uma biopse com lavado brônquico, fui diagnosticada com MAI/MAC e tomei Rifampicina, Azitromicina..." + (show)
@saaa

Em 2014, após uma biopse com lavado brônquico, fui diagnosticada com MAI/MAC e tomei Rifampicina, Azitromicina e Etambutol, por quase 3 anos. A bactéria recidivou, passei a Claritromicina, Etambutol e Rifampicina, por mais 2 anos, melhorei, Agora recidivou novamente azitromicina, Etambutol, Rifampicina e amicacina (EV 3 x na semana). Vamos ver no que dá. Qual é o profissional que verdadeiramente conhece este assunto? Alguem aqui no grupo já se curou? e com o quê?

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Oi @saaa

Um pneumologista que trata micobactérias não tuberculosas saberá mais sobre o MAC / MAI.

Parece que cerca de metade de todas as pessoas com MAC / MAI podem ter uma recaída algum tempo depois de se recuperar.

Boa sorte - desculpe, minha tradução em Português é do Google, Annie @anniepie

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2 replies
saaa | @saaa | Apr 12, 2021
In reply to @anniepie "Oi @saaa Um pneumologista que trata micobactérias não tuberculosas saberá mais sobre o MAC / MAI...." + (show)
@anniepie

Oi @saaa

Um pneumologista que trata micobactérias não tuberculosas saberá mais sobre o MAC / MAI.

Parece que cerca de metade de todas as pessoas com MAC / MAI podem ter uma recaída algum tempo depois de se recuperar.

Boa sorte - desculpe, minha tradução em Português é do Google, Annie @anniepie

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Obrigada, pelo seu comentário. Muito ao contrário, a tradução está perfeita e foi muito bem recebida e com gratidão.

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saaa | @saaa | Apr 12, 2021

Saberia me indicar profissional muito experiente? Já estou nesta caminhad há tanto tempo e tenho piorado muito. Não tenho mais muito tempo a perder. Preciso achar alguem que conheça bem, pode até ser um pesquisador, analiso a submissão a alguma pesquisa com alguma droga nova. Obrigada!

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Dianne | @dpselmark | Apr 12, 2021
In reply to @bluesplashgirl "Hello All, I purchased a LifeStraw liter water bottle and drink my RO water through that...." + (show)
@bluesplashgirl

Hello All, I purchased a LifeStraw liter water bottle and drink my RO water through that. I will leave the link below. Also, make sure you check the "Spring Water" to make sure that it is not just purified tap water. Sometimes it is. I do boil my drinking water at a rolling boil for one minute then let it cool and place it in a dispenser. That is also what I put into my LifeStraw bottle. For those who may be interested: https://www.amazon.com/gp/product/B089QVY8B4/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1

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I also use Life Straw when I am out. However, at home I use distilled water that I it from grocery store. I worry about the minerals or other elements I might be missing. Boiling up all the water I need is problematic when I can buy so cheaply. Do others use distilled water to drink or am I overboard? Hi

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