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:
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
@america…yes, also tooth erosion and vocal chord damage in my experience. Check out Dr. Jamie Koufman's work with chronic cough. She has several acid reflux books.
Liked by Terri Martin, Volunteer Mentor
welcome, I know the feeliing, this is a wonderful group.
Liked by Terri Martin, Volunteer Mentor
@colleenyoung this is long overdue…would be a wonderful addition
Liked by Terri Martin, Volunteer Mentor
@annya @migizii @boomerexpert @ling123 and everyone. I hear you. A better search capability is high on my wish list too. It is definitely a functionality that we hope to work on with the developers in 2019.
In the meantime, here are some tricks that I use.
1. Sort a discussion from newest to oldest
Did you know that you can switch the ordering of messages in a discussion thread to see the new message first? Read this message to find out how:
* [NEW] Customize the Order You View Posts – See New Posts First https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/
2. Search for a discussion in a Group
When I want to see if there is a discussion already on a certain topic, I do the following on my computer or laptop (not so good on mobile devices):
a) Go to the Group page, i.e., MAC https://connect.mayoclinic.org/group/mac-bronchiectasis/
b) Scroll to the bottom and click VIEW MORE until all the discussions are shown.
c) Click Ctrl + F on my keyboard. This will open a search window in the upper right corner of your screen.
d) Enter a search term in the search window. For example "probiotics". All mentions of probiotics in the discussion titles will be highlighted in yellow.
e) Click the discussion of interest.
3. Searching for a specific term WITHIN a discussion.
You can use the same method as above for a discussion, click VIEW MORE until the entire discussion is unfolded. With over 7000 message in this particular discussion thread, that would be a long and frustrating task. But for the shorter discussions it can be useful.
You can always use the magnifying glass search at the top of the screen. It does return results from within discussions. But the sheer number of results can be overwhelming. The more specific the search term you use, the better the results.
And if all else fails … well you can always ask another member or send me a message. 🙂
Anyone else have any search tricks to share?
Liked by Terri Martin, Volunteer Mentor, ling123, Margie E, anniepie
@america Hi america, me too – I have Sjogrens too — dryness mainly affecting my mouth and less my eyes. I've heard it can be one thing predisposing us to NTMs because it causes immune dysregulation, meaning not just an overactive immune system but can go low as well. I wish you good luck and hope you feel better soon
@colleenyoung Thanks for this info again. I'm wondering if the site will be working towards becoming more user friendly for those of us using mobile devices only. I have never found the "magnifying glass" to do a search (which you said may not work on mobile devices)
Liked by Colleen Young, Connect Director
@america
Does anyone think reflux could cause sore throat?