(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.

You might want to research Dr Faulkingham who has done numerous environmental studies concerning MAC and is the MAC world's lead on MAC in your environment.

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@northland

You might want to research Dr Faulkingham who has done numerous environmental studies concerning MAC and is the MAC world's lead on MAC in your environment.

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His correct spelling of his name is: Faulkinham…Sorry

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@windwalker

@unicorn Crista, thank you for checking in. Again, please keep me posted. Also, stay cautious about picking up germs. I don't know about you, but I feel like going into hybernation until this covid-19 passes. The only Corona I want to hear about is the one that you can drink!

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Here it is, January 2023 and I’m still in semi- isolation. Aaaaarrrgh! During Christmas, daughter who lives near me tested positive for Covid. Yesterday son, who lives in Chicago, positive. Here, a big meeting cancelled, speaker has Covid. Traveling Broadway show cancelled. Cast has Covid.
Gaaaaaaaahhhh!

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@woot

Here it is, January 2023 and I’m still in semi- isolation. Aaaaarrrgh! During Christmas, daughter who lives near me tested positive for Covid. Yesterday son, who lives in Chicago, positive. Here, a big meeting cancelled, speaker has Covid. Traveling Broadway show cancelled. Cast has Covid.
Gaaaaaaaahhhh!

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I feel your frustration! We were beginning to relax a bit, u til in the past week 8 friends and neighbors, mostly asymptomatic except for a "scratchy throat" tested positive for Covid. All those fully vaccinated and taking Paxlovid have recovered fully within 5 days. Others, not so lucky, including one in hospital. And then there is the gastric flu… We have returned to only outdoor socializing and very limited sharing of food and space. And masks when out in public. Too many here believe we can go back to "normal" – I wonder when that might happen?
Sue

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@aerogirl

Hi Sue… Please share your thoughts about "good regimen of probiotics" during drug treatment. I currently take 1 JarroDophilus a day, but am thinking 1 three times a day may be better while taking meds? What's your experience?

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I take 1 probiotic (Prevagen) that you can get at the pharmacy with no prescription. The pharmacist said he takes one everyday. I also try and eat yogurt at least 4 hours after antibiotics and it seems to be keeping my gut healthy.

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And also bear in mind that all statistics are past, the statistics for the future will have better outcomes as new drugs are bring trialled and new research undertaken.

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Open to all and any improved drugs or ideas to help fight this nasty disease. No fun over here!

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@woot

Here it is, January 2023 and I’m still in semi- isolation. Aaaaarrrgh! During Christmas, daughter who lives near me tested positive for Covid. Yesterday son, who lives in Chicago, positive. Here, a big meeting cancelled, speaker has Covid. Traveling Broadway show cancelled. Cast has Covid.
Gaaaaaaaahhhh!

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Big Hugs to all of us who are still isolated – and frankly, see no end in sight. I was sure after the first round of vaccines and the booster that life would resume as normal. Then came the bivalent and I thought, aha! here's the end of this. But three years later, I remain in isolation 90% of the time – no lunches (even outdoors) with friends, no movies, no church, and no family gatherings (they're anti-vaxxers). Thank goodness for a wonderful husband and my constant canine companion. Surprisingly though, my days are very busy. I work some (can't go into the office), do chores, do some writing, play with the dog, take long, long walks, and try to remind myself that "this too shall pass." Just sharing here makes me feel a little less alone. Believe me, I'm no Susie Sunshine…maybe I'm just having a better day than usual. In any case, thanks for sharing Woot.

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Thanks for this uplift.!!

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My name is Jane I am new to the site and was diagnosed with mac in 2/22. I have been on the 3 antibiotic 3 day a week regiment since 8/22. Is anyone using a nebulizer and fluttered and if so does it work for them. I have used it twice a day since last August with no results. I can't bring up sputim for testing to the point where they did a broncoscopy one time to get a good sample. I feel like it is there, but can't bring it up.

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