(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.

pop55 | @pop55 | May 3, 2021

In reply to @kathyhg "I started doing this after hearing about it on this forum and got instructions on YouTube...." + (show)

Yes 7%. Some people start at 3% but many are doing 7%. I am on another forum "Mac Lung Disease" most on that forum do 7%.

Sue, Volunteer Mentor | @sueinmn | May 3, 2021

In reply to @kathyhg "I started doing this after hearing about it on this forum and got instructions on YouTube...." + (show)

I use 7% and an inhaler. Has kept my MAC from flaring for 16 months since I stopped antibiotics due to side effects.
Sue

thumperguy | @thumperguy | May 3, 2021

In reply to @sueinmn "I use 7% and an inhaler. Has kept my MAC from flaring for 16 months since..." + (show)

Well how about that Sue? SWEET SIXTEEN. Keep piling them on. Don (Sent as I “smoke” the ole Neb pipe.”

Sue, Volunteer Mentor | @sueinmn | May 3, 2021

In reply to @thumperguy "Well how about that Sue? SWEET SIXTEEN. Keep piling them on. Don (Sent as I “smoke”..." + (show)

Never thought of that. Longest time without bronchitis or pneumonia in over 10 years, so it must be working.
Sue

saaa | @saaa | May 4, 2021

Apesar de 7 anos detratamento, só descobri o Connect há poucos meses, e me sinto muito gratificada pela acolhida, pelo empenho dos members e riqueza das informações. Obrigada a todos!

Google translation:
Despite 7 years of treatment, I only discovered Connect a few months ago, and I feel very gratified by the welcome, the commitment of the members and the wealth of information. Thank you all!

Colleen Young, Connect Director | @colleenyoung | May 4, 2021

In reply to @saaa "Apesar de 7 anos detratamento, só descobri o Connect há poucos meses, e me sinto muito..." + (show)

Você é muito bem-vindo, Saaa. Estou feliz que você encontrou o Mayo Clinic Connect.

You are most welcome, Saaa. I'm glad you found Mayo Clinic Connect.

saaa | @saaa | May 4, 2021

Tomo medicamento oral - Azitromicina, Etambutol e Rifampicina e implantarei um cateter PICC para receber amicacina intravenosa 3 vezes por semana, por 3 meses. Gostaria, por gentileza, de saber mais sobre alguem que tenha utilizado este protocolo e outras opções. Vejo que estão usando alguns medicamentos inalados. Gostaria de saber algo sobre tal protocolo.

English translation
I take oral medication - Azithromycin, Ethambutol and Rifampicin and I will implant a PICC catheter to receive intravenous amikacin 3 times a week, for 3 months. I would like to know more about someone who has used this protocol and other options. I see that they are using some inhaled medications. I would like to know something about such a protocol.

degree | @degree | May 4, 2021

In reply to @hauoli "Thanks Pop55, I am learning a lot from the Mayo Clinic Connect and members like you...." + (show)

I'd be asking around and find a good doctor....I did that and ended up with a good one

hauoli | @hauoli | May 4, 2021

Thanks. So much work to research and to organize. A part of my life has been altered. I have a question. Has anyone ever gone to National Jewish Health and been treated? What is it like?

Sue, Volunteer Mentor | @sueinmn | May 4, 2021

In reply to @hauoli "Thanks. So much work to research and to organize. A part of my life has been..." + (show)

Well, I haven't been to NJH but I understand the feeling of having one's life altered. Trust me, you will settle into a routine and it gets easier.
Hang in there.
Sue

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