(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.

fdixon63 | @fdixon63 | Jul 19, 2022

In reply to @windwalker "fdixon, I used the inhaled toby for many years and it would make me feel worse..." + (show)

Terri. I am (for the first time) doing the Tobi for two weeks on, two weeks off. On the three times I've done it before it was always for 28 days. I always have lost my voice on day three but with gargling salt water I can sorta get back to a growly voice after a week. Thanks again for all the good info. There is an old saying, "A wise man knows it is better to learn off the bumps from someone else's head." That's what we do here.

heathert | @heathert | Jul 19, 2022

In reply to @windwalker "Hi Heather!" + (show)

Hi Terri 🙂

helenrivera | @helenrivera | Jul 20, 2022

Hi everyone, has anyone experienced runny and itchy nose. It came in suddenly and if yes what has worked as I feel miserable also a very bad headache. Taking 800 mg of ibuprofen and it takes the edge off. On all 3 MAC Antibiotics and Aryikace. Please anyone

helenrivera | @helenrivera | Jul 20, 2022

In reply to @windwalker "Hello Helen. I finally ordered an aerobika a few months ago. It still isn't bringing anything..." + (show)

Hello Terri, I am using about 2 times a day but haven't been consistent. Not sure how I feel feel about the Aerobika as I don't feel anything... I am hoping with everything I am on something will help to get my sputum moving. Thanks for responding...

marthamac | @marthamac | Jul 21, 2022

In reply to @helenrivera "Hi everyone, has anyone experienced runny and itchy nose. It came in suddenly and if yes..." + (show)

Those symptoms sound a lot like the current Covid variant. Be sure to get tested and consider Paxlovid if positive!

woot | @woot | Jul 21, 2022

In reply to @helenrivera "Hello Terri, I am using about 2 times a day but haven't been consistent. Not sure..." + (show)

Hi Helen,
Aerobika does help if you use it the right way. Watch YouTube demonstrations. I’m using it now as I write to you, hooked up to my nebulizer cup so I can do both at the same time. My doctor showed me how to connect them. Also a YouTube to show that. National Jewish Dr feels strongly you need Aerobika along with nebulizing 7% saline twice a day. Think of it as your job is Airway Clearance. Good luck.
Linda

macinpa | @macinpa | Jul 21, 2022

In reply to @macinpa "SueinMN....thank you for replying. I've been going back in the posts trying to find you. I..." + (show)

Hi Sue, Is your 3x's a week maintenance or normal dosage? My Doctor usually does it daily for 6 months, confirm negative follow-up cultures, then convert to 3 days a week. He also said he increases the Ethambutol dose when going to 3 days. He also mentions that 3 times is for patients with less significant "burden" of MAI. I don't really know what my burden is other than I don't have symptoms and never have. My MAC was found by change with a CT Scan of my abdominal area. Thanks, MACinPA

Sue, Volunteer Mentor | @sueinmn | Jul 21, 2022

In reply to @macinpa "Hi Sue, Is your 3x's a week maintenance or normal dosage? My Doctor usually does it..." + (show)

I am no longer on antibiotics. My initial Rx was for 3 times a week, which I believe is the usual protocol. When my MAC didn't improve after 12 months, and my lung CT got even worse, it was increased to once a day.
Sue

Terri Martin, Volunteer Mentor | @windwalker | Jul 22, 2022

In reply to @woot "Hi Helen, Aerobika does help if you use it the right way. Watch YouTube demonstrations. I’m..." + (show)

Hi Linda! I am sitting here doing the exact same thing with my Aerobika. Cheers!

Terri Martin, Volunteer Mentor | @windwalker | Jul 22, 2022

In reply to @helenrivera "Hello Terri, I am using about 2 times a day but haven't been consistent. Not sure..." + (show)

Hello Helen. I was bringing up clear sputem before using the aerobike. Ever since I started using the Aerobika; nothing comes up. I think it may be coincidental though. At any rate, I do like how it vibrates my airways; it's like getting a lung massage. I just wish the sputem would come out.

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