(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

@heathert

@anniepie I have signed up, there was some odd answers to questions, maby they want Latino or Hispanic people, oh well hopefully they will keep in touch. Nice to know these trials are being done. Take care Heather

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Hi Heather @heathert, I've finally received the Arikayce and Lamira inhaler system. They just told me to go and look at a video when I get home and gave me the internet address — https://www.arikayce.com/taking-arikayce-video/ . Well I'm totally freaked out by this site. (I've already been on the Big 3 for two and a half years. That was quite stressful enough right at the beginning, thanks. But this is a whole new deal).
The problem is I am alone. I don't have a partner or family or anyone living with me if anything goes wrong. The things they headline you really need to have someone around for — immediately. So i am stuck at the moment, and don't know what to do. I can't start using it yet! Can you help me? Can anyone help?

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@anniepie

Hi Heather @heathert, I've finally received the Arikayce and Lamira inhaler system. They just told me to go and look at a video when I get home and gave me the internet address — https://www.arikayce.com/taking-arikayce-video/ . Well I'm totally freaked out by this site. (I've already been on the Big 3 for two and a half years. That was quite stressful enough right at the beginning, thanks. But this is a whole new deal).
The problem is I am alone. I don't have a partner or family or anyone living with me if anything goes wrong. The things they headline you really need to have someone around for — immediately. So i am stuck at the moment, and don't know what to do. I can't start using it yet! Can you help me? Can anyone help?

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@anniepie Oh my goodness! You need a whole lot more than being told to watch a video. Call Panther pharmacy and see if they can send you an online nurse to walk you through it! If not I will send you my number privately and walk you through it myself. So sorry! I was a wreck even with the nurse. It took me two hours of an online tutorial with a nurse. She was sooo patient. @irene5

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@anniepie

Hi Heather @heathert, I've finally received the Arikayce and Lamira inhaler system. They just told me to go and look at a video when I get home and gave me the internet address — https://www.arikayce.com/taking-arikayce-video/ . Well I'm totally freaked out by this site. (I've already been on the Big 3 for two and a half years. That was quite stressful enough right at the beginning, thanks. But this is a whole new deal).
The problem is I am alone. I don't have a partner or family or anyone living with me if anything goes wrong. The things they headline you really need to have someone around for — immediately. So i am stuck at the moment, and don't know what to do. I can't start using it yet! Can you help me? Can anyone help?

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@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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@irene5

@anniepie Oh my goodness! You need a whole lot more than being told to watch a video. Call Panther pharmacy and see if they can send you an online nurse to walk you through it! If not I will send you my number privately and walk you through it myself. So sorry! I was a wreck even with the nurse. It took me two hours of an online tutorial with a nurse. She was sooo patient. @irene5

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Thanks so much Irene @irene5. Yes I've really had the 'wobbles' about all of this. All the warnings on the website I was given and the video freaked me out about the 'common' side effects.
Just trying to deal with all of this MAC/MAI stuff alone can be really tough. (I really sympathise with anyone in this forum who has to deal with this alone and lives alone).
When I don't get adequate support from some medical specialists it all falls down — that happens too much unfortunately. I wish I had the nursing help you mentioned in Australia where I am, but I don't,
I've now ordered a personal medical alarm etc — because there is nobody around if I have any bad side effects with anything. I won't start the Arikayce until I've got that all in place.
Thanks so much for your kindness. Hugs from Annie x

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@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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@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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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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@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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@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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@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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@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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@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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