(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

@xfirerose

@america, I have had a battle with thrush in my mouth and throat. It finally took a round of two antifungal drugs to finally get rid of it. I also have CVID and I am on antibiotics frequently. These and steroids start my thrush infections. When it is in my throat I gag and have a hard time swallowing.

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Does anyone think reflux could cause sore throat?

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@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.

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Thanks! I have one vocal cord that’s working. The left side is paralyzed and that makes my voice very weak and low. I also have Sjogrens which causes dryness… so this makes a lot of my symptoms real.

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@extratiredalway

Yes good luck to us all. I am so pleased that I stumbled across this site. I felt so alone dealing with my issues. Knowing that there are others going through the same problems makes me feel less doomed.

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welcome, I know the feeliing, this is a wonderful group.

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Is there a way to search specific topics through this very long collection of entries. When I use the magnifying glass I just get the very top level and not entries inside this string of messages. Just wondering. Thank you.

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Is anyone working with a registered dietician/nutritionist? Has it helped?

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@annya

Is there a way to search specific topics through this very long collection of entries. When I use the magnifying glass I just get the very top level and not entries inside this string of messages. Just wondering. Thank you.

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@annya Clicking on the magnifying glass to show the search field where you type in the keyword. After you finish typing, hit the Enter key on your keyboard rather than clicking on the magnifying glass again. This should bring back a list of items containing that keyword. Hope this helps.

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@ling123

@annya Clicking on the magnifying glass to show the search field where you type in the keyword. After you finish typing, hit the Enter key on your keyboard rather than clicking on the magnifying glass again. This should bring back a list of items containing that keyword. Hope this helps.

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@colleenyoung this is long overdue…would be a wonderful addition

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@ling123

@annya Clicking on the magnifying glass to show the search field where you type in the keyword. After you finish typing, hit the Enter key on your keyboard rather than clicking on the magnifying glass again. This should bring back a list of items containing that keyword. Hope this helps.

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I would really like to see this happen too. I was trying to sort through a very long thread one night and I never even got near 2018 entries.

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@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?

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@colleenyoung

@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?

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@colleenyoung Thanks very much Colleen

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@america

Thanks! I have one vocal cord that’s working. The left side is paralyzed and that makes my voice very weak and low. I also have Sjogrens which causes dryness… so this makes a lot of my symptoms real.

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@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

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@kathyg

Hi, Katherine

I wanted to thank you again for referring me to your doctor. I have an appointment with him in February. Hopefully this will be the beginning of my journey to better health. I hope you are enjoying your time in FL, I’m anxious to join you in warmer climes soon…. Take care, Kathy

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Who is the doctor . Could I have the name also, thanks , my docs here have been pretty useless!

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@colleenyoung

@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?

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@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)

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@colleenyoung

@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?

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@colleenyoung Thanks for the tips, Colleen.

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