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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

pamelasc | @pamelasc1 | Jan 25, 2017
In reply to @katemn "Pam, this is how Colleen said to do it .. hope this helps! Hugs! Katherine MAYO..." + (show)
@katemn

Pam, this is how Colleen said to do it .. hope this helps! Hugs! Katherine

MAYO CLINIC CONNECT-DAILY DIGEST ONLY
Way to change the settings so that you only get the Digest at the end of each day, and/or just get responses to emails you send?"
1. Follow only those groups you are interested in, for example the "MAC & Bronchiectasis" group https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Go to your Account Settings here: https://connect.mayoclinic.org/account/
3. Scroll to Notifications section of the page.
4. Choose the time of day you would like to receive the daily digest.
5. Be sure to tick the box that says "Only include the specific threads and groups this user follows in their digest."
If you wish to unsubscribe from receiving individual email notices for every post made to a discussion, simply click "Unsubscribe from this discussion thread." at the bottom of the email.
For more helpful tips on using Connect, see this page https://connect.mayoclinic.org/get-started-on-connect/

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thanks so much Katherine!  Pamela   

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maryjo2sell | @maryjo2sell | Jan 25, 2017

I remember someone asked about pricing for Aerobika. I did look on eBay and there are some new ones available about
half price. You could easily stererlize the Aerobika if you worry about eBay. Totally off the subject, I keep forgetting to bring up
rinsing your mouth thoroughly after using any inhalers. This is to avoid getting thrush mouth.

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boomerexpert | @boomerexpert | Jan 25, 2017
In reply to @ginak "Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a..." + (show)
@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I've read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don't seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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I must clarify that if/when my tests come back indicating I've worsened, I must and will do whatever i must to keep my lungs from worsening, and in fact hopefully improving! Side-effects be damned if I get them....bring 'em on! A whole lot better than having my lungs eaten away...!

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Katherine, Alumni Mentor | @katemn | Jan 25, 2017
In reply to @ginak "Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a..." + (show)
@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I've read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don't seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Boomer, I have a feeling those darn critters wouldnt stand a chance with your Warrior attitude! Go get 'em! Katherine

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EHLINY | @ehliny | Jan 25, 2017

Is it true that MAC sufferers are not supposed to use steroid inhalers for fear of lung infections? Does anyone have any information on this?
thanks!

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1 reply
Katherine, Alumni Mentor | @katemn | Jan 25, 2017
In reply to @ehliny "Is it true that MAC sufferers are not supposed to use steroid inhalers for fear of..." + (show)
@ehliny

Is it true that MAC sufferers are not supposed to use steroid inhalers for fear of lung infections? Does anyone have any information on this?
thanks!

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@ehliny, absolutely wrong! I use TWO inhalers prescribed by Dr. Aksamit .. Qvar and Atrovent! Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Jan 25, 2017

@maryjo2sell, Maryjo that is a really good point about Ebay .. just sterilize! AMEN about the inhalers and thrush! Despite daily probiotics and careful rinsing .. I am BATTLING oral thrush .. what a PAIN. After every antidote/prescription known to man I am now using Mayo's 'Magic Mouthwash'. I laughed when I first heard that .. BUT every pharmacist knows about it .. but it takes a 'compound' pharmacy to make it up .. not just a regular pharmacy. So far it is helping but has NOT eliminated it.

Just googled it .. found three things .. am going to request prescriptions and see if it helps! At night sometimes it hurts so much I bite my tongue!! I found: I'd just tell the Dr when you go in for the Diflucan pills to also give you a good size bottle of "nystatin swish and swallow" so you don't have to keep coming back for thrush. It can be a pain going to the Dr so often. For painful spots .. * topical- brand name is Kenalog .. Triamcinolone Acetonide to apply to the spot. I am going to give these things a try! Katherine

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maryjo2sell | @maryjo2sell | Jan 25, 2017

I have used our similar local "compound" for geographic tongue. So sorry you got the thrush. It is a problem with the inhalers. I only use mine when really needed- Symbicort or Spiriva. I have found that they can help clear up my airways a bit after I have just done my own " clearing". Right now I am taking extra meds as I got shingles over the weekend. I am lucky it is not a big, bad case, as I had the vaccine. But still, not a lot of fun!
I really appreciate your forum and all the work you must do! Have a good night!

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21 replies
gaylejean | @gaylejean | Jan 25, 2017
In reply to @katemn "Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila ....." + (show)
@katemn

Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @del .. Del, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7, @jewel8888 .. Julie, @josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @marzz .. , @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pfists .. Shari ,@pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @worriedson, and anyone else I forgot to make note of!

Just a tip:
If you want to get to the VERY LAST POST ON OUR OUR FORUM .. OR TYPE A VERY NEW POST .. NOT A REPLY TO A POST:
1. Wherever you are on the Forum .. go to the VERY END of that particular page
2. At the bottom of the page you will see a square marked "LAST"
3. Hit "Last" .. it will take you to the very END/last page of our Mayo Clinic Connect

Hope your find this helpful! Hugs! Katherine

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This is news to me...have used Medicare since I turned 65.

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Katherine, Alumni Mentor | @katemn | Jan 25, 2017

@maryjo2sell Maryjo interesting that you STILL go shingles even though you got the shot! WOW . . I thought I was safe having gotten the vaccine .. hmmm! Hope you are not too bad with it .. my daughter in law had it (no vaccine) and was just miserable. Keep us posted with how it goes for you.

I did a bunch of more research on oral thrush .. am seeing someone next week on another issue .. am going to try to "slip in" this issue if I am able to! If I get any info .. I will for sure to share it on oral thrush! Hugs! Katherine

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