1. < MAC & Bronchiectasis

(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.

jr2366 (Jennifer) | @jr2366 | Dec 21, 2020
In reply to @ginak "@jr2366 Your story sounds a lot like mine. Except I had that lung surgery at NYU..." + (show)
@ginak

@jr2366 Your story sounds a lot like mine. Except I had that lung surgery at NYU to cut out the nodule and do the biopsy. It was very painful, especially every time I coughed! That’s how MAC/MAI was diagnosed. I’ve never gone on any meds because my yearly CT scans show the nodules “wax and wane” and are relatively small, also, aside from the cough, I have no symptoms from MAC.

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So gina I’m now on the Arikayce praying this works after 1 year to 18 months . I’m on day 6 ugggh so long to go . So Gina I already had a lung biopsy that was painful also why did they do surgery? And did you do any biopsies before your surgery as well I’m just trying to see why you had the surgery

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lynn55 | @lynn55 | Dec 21, 2020
In reply to @jr2366 "Hi Sue I was sick back in December 2019 and every X-ray and ct scan I..." + (show)
@jr2366

Hi Sue I was sick back in December 2019 and every X-ray and ct scan I took it showed fuzziness in my scans, inflamed so My pulmonologist put me on antiobiotics 3 rounds of it and predisone pills did repeat ct scans and they were showing nodule slightly larger still inflamed so they decided to do a lung biopsy so I did that dr recommend surgery to cut out nodule that was slightly larger I said no way Im Going to Manhattan to Sloan Because now I’m feeling pain so I did I went in To do this last August to see what was going on and for a second opinion thank god I did , dr told me let’s do a bronchoscopy so I did that and that’s when he said it was MAC I then followed up with another pulmonologist where I live Cause my first one I didn’t trust and My new pulmonologist he said take Arikayce so it’s been 3 days on it so far Praying I get better he says I need to be on this for 12-18 months I had training today for it to make sure I was doing it correctly when I clean unit and if I’m using nebulizer correctly. Write me back sue if you could thanks how are you feeling tell me about your experience as well I’m glad we can chat with each other I feel little better that we could do this . Thanks

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Hi Jennifer, Sounds like you have had a rough year. It does get easier but there is no denying life is different. I was first diagnosed with COP in 2014 following a diagnosis of pneumonia that did not respond to antibiotics. A CT scan showed opacities and nodules. A bronchoscopy with cultures found MAC. Prednisone calmed my lungs but showed extensive bronchiectasis. Over the last 6 years I’ve had a PICC line in for treatment of MAI and been on the big 3 for 2 years for MAC. Right now my pulmonologist and ID doc are doing the wait and see approach as I feel good. Still have some nodules but they are so much smaller. So some advice. I am a rehab nurse and learned early on exercise was so important for my lungs and wellbeing. I do breathing exercises everyday and 30 minutes on a stationary bike. 2 walks a day. So far my lung function is normal and my goal is to keep it there. Learn your body and follow your instincts if you feel something is off. Good luck with the medication. You are not alone.

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rvan | @rvan | Dec 21, 2020

Hi Lynn, I have not been diagnosed as of yet but this sounds like me and I may even be worse off. Prednisone calms me for a few weeks but then it comes back just as bad and I have great difficulty breathing. A single sputum test did show Mycobacteria. Soon I will have a scope in my lungs to determine 100%. I will remind myself of what you are doing to help yourself ,, thank you.

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1 reply
lynn55 | @lynn55 | Dec 21, 2020

It can be tough to get diagnosed and take time. A bronchoscope was able to give clarity for me. I pray it does the same for you.

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rvan | @rvan | Dec 21, 2020

Thanks Lynn , much appreciated.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 21, 2020
In reply to @rvan "Hi Lynn, I have not been diagnosed as of yet but this sounds like me and..." + (show)
@rvan

Hi Lynn, I have not been diagnosed as of yet but this sounds like me and I may even be worse off. Prednisone calms me for a few weeks but then it comes back just as bad and I have great difficulty breathing. A single sputum test did show Mycobacteria. Soon I will have a scope in my lungs to determine 100%. I will remind myself of what you are doing to help yourself ,, thank you.

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This seems to be typical. Unless you are already diagnosed with bronchiectasis, MAC is not something the docs think of until everything else fails. My own diagnosis took over 2 years of repeated illness and coughing with numerous rounds of prednisone and antibiotics. Then 2 months to control pseudomonas and 18 months of MAC antibiotics. And 4 different docs plus some ER visits.

You might like to contact your docs and ask about a nebulizer with saline and airway clearance to help move everything out of your lungs while awaiting final diagnosis.

Sue

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1 reply
rvan | @rvan | Dec 22, 2020
In reply to @sueinmn "This seems to be typical. Unless you are already diagnosed with bronchiectasis, MAC is not something..." + (show)
@sueinmn

This seems to be typical. Unless you are already diagnosed with bronchiectasis, MAC is not something the docs think of until everything else fails. My own diagnosis took over 2 years of repeated illness and coughing with numerous rounds of prednisone and antibiotics. Then 2 months to control pseudomonas and 18 months of MAC antibiotics. And 4 different docs plus some ER visits.

You might like to contact your docs and ask about a nebulizer with saline and airway clearance to help move everything out of your lungs while awaiting final diagnosis.

Sue

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Thanks Sue, I feel better knowing there are people like you on here to provide guidance ! I hope to beat this with all of support and knowledge provided ! Thanks again 🙂

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Dec 23, 2020
In reply to @jr2366 "Thank you so much I was just told filtered water from my refrigerator is good as..." + (show)
@jr2366

Thank you so much I was just told filtered water from my refrigerator is good as long as you change the filter and I wash my vegetables with boiled water. I also was told to clean my shower head with with bleach or vinegar. And if you’re cannot remove it put a bag around it with the liquid in it . I’m so new to all this I’m trying to learn this as I go along. Let’s keep in touch we will learn from each other . I take Arikayce everyday through a mini nebulizer. I have to do this for 1 year to 18 months , Not happy about this I only started 3 days ago but I have to in order to get rid of this MAC thanks so much for your input Jennifer

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Hi Jennifer, I just found this great article on MAC and reducing exposure. It sites some of the things you talk about. I found this very eye opening. https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.201301-013FR
Take care and good luck. Carolyn

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5 replies
irene5 Irene Estes | @irene5 | Dec 23, 2020
In reply to @bluesplashgirl "Hi Jennifer, I just found this great article on MAC and reducing exposure. It sites some..." + (show)
@bluesplashgirl

Hi Jennifer, I just found this great article on MAC and reducing exposure. It sites some of the things you talk about. I found this very eye opening. https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.201301-013FR
Take care and good luck. Carolyn

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@bluesplashgirl That is a great and sobering article as it definitely reminds me that similar to Covid 19, those of us with MAC can’t let our guard down for a minute. Thank you. @irene5

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 23, 2020
In reply to @bluesplashgirl "Hi Jennifer, I just found this great article on MAC and reducing exposure. It sites some..." + (show)
@bluesplashgirl

Hi Jennifer, I just found this great article on MAC and reducing exposure. It sites some of the things you talk about. I found this very eye opening. https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.201301-013FR
Take care and good luck. Carolyn

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Thank you, Carolyn. I had lost my link for this article, which had=s been posted here before. I have added it to my bookmarks, so now I can easily refer people to it. It is concise, but contains references to the scientific studies in case people want more details.

Sue

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