(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 | Feb 8, 2021

In reply to @jr2366 "Hi Annie can I ask you a question we’re you just on Arikayce alone because I’m..." + (show)

Sorry Jennifer ( @jr2366 ) I think you've got me mixed up with someone else in this group.

I will be starting Aricayce soon, this month, for the first time. And I will definitely NOT be taking Aricayce alone -- I will be continuing with other Big 3 drugs too. That helps prevent resistance from developing to Aricacye !

Please ask Heather ( @heathert ) and Irene ( @irene5 ) for advice about their time using Aricayce -- they are among the experts on Aricayce here.

PS. I don't think you should be on 1 drug alone -- Aricayce is an important 'salvage' drug for us people who don't respond to the other Big 3 meds. Like I said above: taking only 1 drug could lead to increased resistance developing to Aricayce in our community. (I don't think Heather or Irene were on only Aricayce either). Please talk to your pulmonologist or infectious diseases doctor about this again.

Good luck Jennifer
Annie

anniepie | @anniepie | Feb 8, 2021

In reply to @heathert "@anniepie Thanks Annie, I have no idea how much it will cost, I will only need..." + (show)

Hugs and best wishes Heather @heathert.
I hope these drugs are funded by our governments soon

alleycatkate | @alleycatkate | Feb 9, 2021

In reply to @poodledoc "@lorifilipek Lori, Funny I was just getting ready to post this same article. Looks like follow..." + (show)

@poodledoc Hi! Was wondering how often you and others get CT scans? I have nodular Bronchiectasis (&MAC) and my Dr wants to stay up on them but I question if yearly CT scans are neccessary. I have requested alternating CT with Xrays as I understand they have much less radiation. Any thoughts? Kate

irene5 Irene Estes | @irene5 | Feb 9, 2021

In reply to @alleycatkate "@poodledoc Hi! Was wondering how often you and others get CT scans? I have nodular Bronchiectasis..." + (show)

@alleycatkate Hi Kate. I was getting them every six months in the beginning. Because I am not a spitting kind of gal -( dry as a bone) I have to have a yearly CT scan. Since being on the Arikayce, however, I have lots of the P and M words! Irene

cmi | @cmi | Feb 9, 2021

In reply to @irene5 "@alleycatkate Hi Kate. I was getting them every six months in the beginning. Because I am..." + (show)

Irene...P & M?? Puss & Mucus??

alleycatkate | @alleycatkate | Feb 9, 2021

In reply to @irene5 "@alleycatkate Hi Kate. I was getting them every six months in the beginning. Because I am..." + (show)

@irene5 Irene, Thanks for your input! P & M...Piss and Moan? Kate

jr2366 (Jennifer) | @jr2366 | Feb 9, 2021

In reply to @anniepie "Sorry Jennifer ( @jr2366 ) I think you've got me mixed up with someone else in..." + (show)

Thank you for this info and I did make an appt with another dr this month

ginak | @ginak | Feb 9, 2021

In reply to @alleycatkate "@poodledoc Hi! Was wondering how often you and others get CT scans? I have nodular Bronchiectasis..." + (show)

@alleycatkate I have same Dx, I get yearly scans now. Like Irene, I was getting it every 6 months in the beginning. It’s my understanding, that now there are ‘low dose’ CT scans. Not as much radiation. I guess we have to decide which is the lesser of two evils. Radiation vs infection.

alleycatkate | @alleycatkate | Feb 9, 2021

In reply to @ginak "@alleycatkate I have same Dx, I get yearly scans now. Like Irene, I was getting it..." + (show)

@ginak Thanks so much. Not a fan of radiation nor infection. Never know if I am prudent or 'over-the-top' with my concerns. Kate