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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.
Connect
Or you can click Discuss at the top of the page, select Groups. Scroll down to find MAC & Bronchiectasis then click Follow.
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Hug
2 ReactionsI thought that's what I was following. I've been getting all the emails since January. It's just the last few days seemed like there were hardly any posts. Just wanted to be sure. I clicked on the link and it brought me back here.
Thanks.
Gina K
@colleenyoung
Hi Colleen, I think I figured out why. I see Terri M has started new discussions about various topics that were being discussed on the original page. I never went to that page before. I always just followed Kate's original post.
Thanks for your help.
Gina
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1 Reaction@ginak, I also went to Terri M's other topics but I've not been dropped from this group. I think there hasn't been any posting the last few days. Before today, the last posting I received email for was from this group was Aug. 25.
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1 Reaction@ling123 Thanks Ling, I think that's what it is too. There just hasn't been as many postings the last few days.
@ginak @ling123 That's odd because according to the daily digest there have been 5-25 posts every day since Aug. 25 except Aug . 27. Do you both receive the Daily Digest?
@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for any posting from this group, MAC & Bronchiectasis. I can see it under Groups in my profile. Does that mean that I'm following it, or do I need to click Follow?
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1 ReactionYes, I do receive that, but I don't click on the other discussions. I was only following the original one started by Kate, the MAI/MAC Bronchiectasis one that has over 300 pages. I think there were about 40 pages when I started. Lol
@colleenyoung - That's interesting because I haven't been seeing too many either. Sometimes I see answers to posts that I haven't seen. I've been wondering if something changed and I missed it, but since Katherine passed, it's been pretty quiet. I haven't jumped in to ask because I've been super busy. I get the Digest but rarely look at it because I try to keep up with the daily posts and set aside the ones of interest to me. Linda M
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2 ReactionsAccording to your profile you are following the MAC group (as you rightly said). What do you see on this page? https://connect.mayoclinic.org/group/mac-bronchiectasis/
Under the description of the group does it say +Follow or +Following?