(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@katemn

@maryjo2sell, Maryjo, thank you so much for the great info! Where did you find the best price to purchase yours?

Question: Are you working from the Daily Digest?
1. if so just hit ‘VIEW & REPLY’ just under that particular post .. then you can reply/answer .. or “LIKE/heart” .. (do NOT nit REPLY BY EMAIL . that will not go on the Forum)

Question: Are you working from individual emails?
1. if so just hit ‘VIEW & REPLY’ just under that particular email .. it will take you to our Forum .. then you can reply/answer .. or “LIKE/heart”
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=23#post-247625
Hope this helps .. if it doesn’t .. just let me know! Hugs to you! Katherine

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maryjo2sell, Maryjo, that is SO great that you got that appointment! Please keep us posted .. he is supposed to be GOOD! Don’t forget to have a copy of your records to take with you .. AND a list of questions! Hugs! Katherine

Colleen is SO much more techie than I am .. here is what she said .. hope that helps more!
PER COLLEEN
I just want to step in and clarify the reply functionality.
1. Reply by email: When you choose to reply by email, your response is uploaded to the forum directly below the message to which you are replying.
2. VIEW & REPLY: Clicking the View & Reply button in the email notices will take you directly to the message in the email. However, because this discussion is over 2000 messages long, it takes a few minutes to re-direct you from the top of the thread to the specific message. I find I typically have to wait 3-6 seconds before I’m taken directly to the message, depending on the strength of the internet or data connection that I have.
The email notifications truncate long messages. So if someone has written a detailed message, you may not see all of it in the email notice. I prefer to use the View & Reply button because then I can see the messages the come before or after the message that I plan to respond to. It gives me the full context of the conversation. Just my preference though.

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@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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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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@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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@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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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

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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@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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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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@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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@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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@maryjo2sell

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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Maryjo I also got shingles last spring….9 years after having vaccine. They put me on an antiviral med and neurontin for pain.It was shot lived and not too bad. I read that about 30 % of folks vaccinated still get shingles but not as bad.
I asked my ID dr at NJH re current thoughts on getting boosters for the vaccine. SHe said there is talk…..but that there is a much better vaccine being worked on in Europe and to hold out a few years for it. Terrid

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@maryjo2sell

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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Thanks for the info Terri .. if you hear about the vaccine from Europe let me know .. I think I’ll do a google alert on it! Hugs! Katherine

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@maryjo2sell

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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Katherine ….i think she said it would be a few years….terrid

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@maryjo2sell

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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Terri, interesting article:
London-based GSK has just submitted a Biologics License Application to the FDA for its shingles vaccine candidate, Shingrix. Though it is still experimental, the vaccine is proving itself superior to the standard vaccine from Merck & Co and could net British drugmaker close to €1Bn, says FierceBiotech. Katherine
http://labiotech.eu/gsk-shingles-vaccine-shingrix/

Liked by tdrell

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