(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.

Sue, Volunteer Mentor | @sueinmn | 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, Heather - that's exactly the info needed. Now to find out if my insurance will pay for (any) of it - always an issue, especially with Medicare. My daughter has tried the smaller hand-held "impeller" type units and reports that they don't last because the screens in them become inefficient over time. Managing this condition is a trial sometimes.
Sue

heathert | @heathert | Dec 17, 2019

@@sueinmn I hope this lasts longer for us all, Its a really great machine so far. Good luck Heather

heathert | @heathert | Dec 17, 2019

In reply to @judyhodgern "That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not..." + (show)

@judyhodgern Hi I do not have shortness of breath, fantastic, and I do cough occasionally, maby from the Bronch or my allergies but not like when I had MAI raging through my lungs. I had a few cavities and they have now closed but left scaring unfortunatly. So yes pretty much symptom free, phew. I hope you will be soon too. Are you also on the big 3 antibiotics.Take care and look after yourself after the surgery. Heather

vetnyregr | @vetnyregr | Dec 19, 2019

In reply to @judyhodgern "That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not..." + (show)

Do you have Dr. Mitchell for your surgeon? I will have my right lobe removed by him in April. Pray you are doing fine. Is it a long and painful recuperation? Please add any guidance you have for me. Best wishes for speedy health!!!!!!!