(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.

poodledoc | @poodledoc | Jan 17, 2021

In reply to @anniepie "You're right @poodledoc. The Azithromycin is a known culprit for the few people on it longterm..." + (show)

@anniepie I am a retired Veterinarian of 43 years. My favorite dog breed is the Standard Poodle thus the name poodledoc. After being diagnosed with bronchiectasis and MAC in 2019 I researched medical patient forums and found this one from Mayo Clinic Connect to be far and away the best one out there for my lung condition. There are many very informed people willing to share their first hand experience with our condition. If anyone is a newbie here, there is a lot of good information in this particular thread (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS which was started in 2011 and now has over 1500 posts. Regarding susceptibility testing, in my opinion it should be mandatory for MAC or other NTM infections that are going to require long term multiple antibiotics each with known side effects. Why not be sure your bacteria are even capable of being killed by the antibiotics before using them.

rvan | @rvan | Jan 17, 2021

Poodledoc I have yet to be confirmed with MAC or anything else besides Asthma but my symptoms point to it , fingers crossed it’s not 🙂 but I have been on here for a short time and have learned so much. I agree about the antibiotics after reading everything , do I take it for years if the end result is a guessing game .... thoughts everyone ?

jr2366 (Jennifer) | @jr2366 | Jan 17, 2021

In reply to @heathert "Hi @anniepie, my Dr says that Arikayce is good to clear mac up for a while..." + (show)

Hi Annie sorry to hear your back on meds I’ve been in Arikayce since dec 16th I have MAC been diagnosed recently like around Aug how long were you on Arikayce if you don’t mind me asking. When you were taking Arikayce can you tell me some of your symptoms. Now that your on the big 3 which can your body tolerate better Arikayce or the big 3 I’m little Afraid after taking Arikayce I will have to do the same as you. If you could give me some feed back I would appreciate it I hope you feel better.

heathert | @heathert | Jan 17, 2021

In reply to @poodledoc "@anniepie I am a retired Veterinarian of 43 years. My favorite dog breed is the Standard..." + (show)

@poodledoc I completely agree about the susceptibility testing, very important for us MAC patients.

anniepie | @anniepie | Jan 18, 2021

In reply to @jr2366 "Hi Annie sorry to hear your back on meds I’ve been in Arikayce since dec 16th..." + (show)

Hi Jennifer @jr2366. I haven't started Ari

anniepie | @anniepie | Jan 18, 2021

In reply to @heathert "@poodledoc I completely agree about the susceptibility testing, very important for us MAC patients." + (show)

Sorry -- computer glitches. Hi Jennifer @jr2366. I haven't started the Aricayce yet -- it might take a month or longer to get it from the USA (I am in Australia). Heather (@heathert) is the 'expert' on Aricayce right now, so I'd ask her about it.
I think when I do start Aricacyce, then I will be on 4 drugs altogether -- the 'big 3' plus Aricayce.
Don't worry too much about the big 3. Each drug has its side effects and many people only get some of the minor issues.. It really seems to be about how long you have to take the meds. For some people it needs to be 3 years or longer. Taking anything for that long might give some people a few more problems.
If you have mycobacterium Avium maybe you will need to be on the drugs for a shorter time.
Like I think Irene said, I'm surprised your pulmonologist has put you on only 1 drug. Possibly there is more risk of developing drug resistance that way. That's why they usually put us on 3 drugs at the same time -- partly it is to slow down the development of drug resistance to the macrolide (Azithromycin or Clarithromycin).
Good luck Jennifer

anniepie | @anniepie | Jan 18, 2021

In reply to @poodledoc "@anniepie I am a retired Veterinarian of 43 years. My favorite dog breed is the Standard..." + (show)

I thought so -- you know your antibiotics well.
I agree the susceptibility testing should be mandatory, of course -- there is no point using other drugs that won't help.
But my own experience is bit disappointing really -- we can't rely on a quick treatment just because the susceptibility test shows the best drugs to use.
When I was diagnosed in 2018, the pulm. doctor said my m.Intracellulare was found to be "extremely susceptible" to Macrolides -- Clarithromycin or Azithromycin.
But after 2 and a half years on the Macrolides with other drugs, I still haven't got rid of the m.Intracellulare yet.
The issue is that ALL of the Intracellulare lives inside a very tough biofilm inside my lungs -- so very little of the bacteria is found in the 'young' and temporary planktonic stage that antibiotics are able to attack. Antibiotics have a difficult time getting into the biofilm to fight this bug. That's why it can take so long to treat this disease.
And susceptibility testing is maybe a little bit artificial if you have m.Intracellulare. For susceptibility testing, they just test in a petri dish whether the drug can fight the PLANKTONIC stage of the bacteria only, not whether it can get through the biofilm first to fight the older bacteria inside of that.
(This biofilm can be very tough, so it's hard for drugs to get through. In the environment, mycobacterium biofilm is even found on rocks straight underneath waterfalls! That's a lot of shearing force the biofilm must withstand -- and it does withstand it!).
Sorry, that's a long explanation -- LOL
But I definitely agree with you that this is the best online site -- I'm so grateful for all the help I've had from people in this forum.
Good luck to you

ellenn | @ellenn | Jan 18, 2021

In reply to @poodledoc "@anniepie I am a retired Veterinarian of 43 years. My favorite dog breed is the Standard..." + (show)

How do I find that thread?
Thanks,
Ellen

poodledoc | @poodledoc | Jan 18, 2021

In reply to @ellenn "How do I find that thread? Thanks, Ellen" + (show)

Hello ellen @ellen , You are currently on that thread. Check the top of the page and you will see Groups / MAC & Bronchiectasis / (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS. Then scroll down a bit and click on First page We are currently on page 585 so there are a lot of posts to browse through if you wanted. Make sure you are signed up in groups for "MAC & Bronchiectasis" so you will get any new posts automatically to your e-mail.

heathert | @heathert | Jan 18, 2021

In reply to @anniepie "I thought so -- you know your antibiotics well. I agree the susceptibility testing should be..." + (show)

@anniepie I had no idea that the susceptibility test was not great, surely they could do some longer term biofilm testing on Intracellulare. I was on the big 3 for 3 years, 3x weekly and 2 years daily (the last year with Arakrice) before it finally stopped doing damage in my lungs. It can be long haul. Take care Heather

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