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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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<br><br><br><br><br>Maryjo, I too have trouble using this forum. I just reply straight from my <br>e-mail. The View & Reply button does not take us directly to the thread we <br>want to reply or comment on.<br> <br><br>
<br><br><br><br><br>YES! Thank you!<br> <br><br>
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1 ReactionHi, @windwalker @maryjo2sell and everyone.
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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2 ReactionsThank you SO much Colleen .. YOU are the Guru! This is an excellent clarification! I posted merely what I knew .. but being a bit non techie .. I only posted what I knew and used .. YOU posted the ACTUAL!! Thank you! Katherine
Hi. Ok. Sorta did get the reply, Katherine. Haha. Anyway, excited to have just gotten an appointment with Dr. Leventhal at Mayo Florida in February. Looking forward to it!
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1 Reactioncan someone tell me if it is possible to get JUST the end of the day Daily Digest, and not all the emails that come in? I went to settings but it really is not very clear there how you do that. Thanks, Pamela
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/
Hello Catherine, I didn't have Aerobika instead I have the expand the Lung that I used for breading exercise. I asked you about Aerobica I was going to buy it but now I just used expand the Lung. Anything I can do to help let me know. Thanks Cila
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1 Reaction@cila, thanks Cila! I also recommended it to a friend who had not yet been diagnosed with his lung issues .. but he is NUTS about the Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com .. uses it several times a day! This is really weird .. he was JUST diagnosed with MAC!! Men are not the usual candidate .. AND he does NOT want to discuss it with me or anyone .. so I am just honoring his need right now for privacy. Just glad I recommended that unit BEFORE he was diagnosed and he is using it daily. I KNOW it will help his lungs. Frankly .. the Expand-A-Lung Breathing Fitness Exerciser is so much cheaper .. 1/3 the price .. BUT it helps with lung health but not really in getting up the sputum .. so perhaps BOTH have their place in our MAC health regime .. depending on our needs? Hugs to all! Katherine
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.