(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.

rits | @rits | Dec 11, 2019

Wow. So many machines. I bought mine 6 or 7 years ago and I don"t see anything like it. The ones on the website look much smaller and nicer and I'll bet they're quieter and faster. On another site, people are recommending a ombra. They say that it's fast.

heathert | @heathert | Dec 11, 2019

In reply to @rits "I googled the eflow and it looks like the Arikayce nebulizer. It is REALLY expensive. Did..." + (show)

@rits No I thought it was worth purchasing, despite the cost, it saves me time, easy to clean, does a great job, has no tubing which can harbor germs and is so compact I do not need a travel unit also, can plug in or run off internal battery, a really great machine, I am all for easy at this stage of my life. Insurance may pay for it.

anniepie | @anniepie | Dec 16, 2019

In reply to @heathert "@rits No I thought it was worth purchasing, despite the cost, it saves me time, easy..." + (show)

Hi Heather @heathert Did you order your Pari Eflow from the USA?
Hope you're good -- you've finished the meds, right?
Hugs from Annie

Sue, Volunteer Mentor | @sueinmn | Dec 16, 2019

In reply to @heathert "@rits No I thought it was worth purchasing, despite the cost, it saves me time, easy..." + (show)

@heathert Hi Heather, I don't find a Pari online that has no tubing, can you give me an exact model #? It sounds like what I am looking for because we travel a lot and I need a tiny machine that can be adequately cleaned while on the road.

heathert | @heathert | Dec 16, 2019

In reply to @sueinmn "@heathert Hi Heather, I don't find a Pari online that has no tubing, can you give..." + (show)

@sueinmn It is the Pari Eflow Rapid.
https://www.pari.com/int/products/inhalation-devices-for-the-lungs/eflowrrapid-nebuliser-system/
Hope it is what you want.

Take care

Heather Tietjens

heathert | @heathert | Dec 16, 2019

In reply to @anniepie "Hi Heather @heathert Did you order your Pari Eflow from the USA? Hope you're good --..." + (show)

@anniepie yes I purchased from USA Pari. Here is the link about it, such a great machine.
https://www.pari.com/int/products/inhalation-devices-for-the-lungs/eflowrrapid-nebuliser-system/
Yes I am off the meds and doing well . Take care Heather

alleycatkate | @alleycatkate | Dec 16, 2019

In reply to @heathert "@anniepie yes I purchased from USA Pari. Here is the link about it, such a great..." + (show)

@heathert Great News...off meds!! 🙂 Kate

heathert | @heathert | Dec 16, 2019

@alleycatkate Thank you, its been along time coming. :}

judyhodgern | @judyhodgern | Dec 17, 2019

In reply to @alleycatkate "@heathert Great News...off meds!! :) Kate" + (show)

That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not coughing or SOB?? You probably aren’t but I was just wanting to see someone that is so fortunate of not having the organisms that you are able to be symptom-free. I would presume that is just wonderful!!. Thank you so much.
I just had surgery about four days ago and my right upper lobe Of my lung was removed so I’m hoping that it will help my symptoms and I will be a stopping coughing in the future and puttinga Me in remission for a couple of years🙏🏻🙏🏻🙏🏻🙏🏻 I am still in hospital at the Univ of Colorado. Laparoscopy but still major surgery.

anniepie | @anniepie | Dec 17, 2019

In reply to @heathert "@anniepie yes I purchased from USA Pari. Here is the link about it, such a great..." + (show)

Thanks very much Heather @heathert -- you take care too

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