(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

ginak | @ginak | Oct 5, 2018

In reply to @margaretg "Hi Colleen, I haven’t received emails from the forum since Monday of this week. Could you..." + (show)

@margaretg I’ve noticed most of my emails have been going to my SPAM folder all of a sudden. I didn’t change any of my settings, so I don’t know why. I’ve been going and marking them “Not SPAM”. Maybe check your SPAM folder and see if they’re there.
GinaK

Colleen Young, Connect Director | @colleenyoung | Oct 5, 2018

In reply to @margaretg "Hi Colleen, I haven’t received emails from the forum since Monday of this week. Could you..." + (show)

Hi @margaretg,
The emails have likely been sent to your spam folder as @ginak suggested. This is related to the update we did to our email server due to the increased activity on Connect (yay). I explain it in this post: https://connect.mayoclinic.org/discussion/alert-links-will-not-work-in-email-notifications-dated-before-oct-1/

Please check your spam folder and mark the Connect emails as Not Spam. You can also add "@n1.hubapplication.com" to your safe sender list.

Let me know if this helps.
Colleen

PS: Here's a tip about filtering and organizing Connect emails into a specific folder
- [Tip] Filter your Connect emails into a folder https://connect.mayoclinic.org/discussion/tip-filter-your-connect-emails-into-a-folder-1/

Jane S. Brown | @macjane | Oct 6, 2018

Can MAC produce low temperatures in morning and higher ones at night? Thanks Jane Brown

Terri Martin, Volunteer Mentor | @windwalker | Oct 8, 2018

In reply to @boomerexpert "This is why I use an adjustable bed...helps both my lungs and my RA" + (show)

@boomerexpert I am strongly conteplating an adjustable bed also.

Terri Martin, Volunteer Mentor | @windwalker | Oct 8, 2018

In reply to @margaretg "Hi Colleen, I haven’t received emails from the forum since Monday of this week. Could you..." + (show)

Never mind.

margaretg | @margaretg | Oct 8, 2018

Thank you, Terri and Colleen! My connection with the forum is back to normal now.

america | @america | Oct 14, 2018

In reply to @irene5 "That is wonderful news! Yay!" + (show)

Hi everyone this is really exciting for me!! I have completed 28 days of my Tobramycin!!! Freedom for another 28 days!!! What a journey it’s been. Grateful for all the encouraging words!! Thanks Rita

Terri Martin, Volunteer Mentor | @windwalker | Oct 17, 2018

In reply to @america "Hi everyone this is really exciting for me!! I have completed 28 days of my Tobramycin!!!..." + (show)

@america Hi Rita! Now that you have finished the toby, are you feeling any improvement?

america | @america | Oct 17, 2018

Hi Terri! I have done more in the past 3 days than I have done in past few months! It’s really great to feel alive again. I am so grateful for the choice of medication and a wonderful doctor! For this group and Mayo! But special thanks to you Terri! You have been the biggest help.

boomerexpert | @boomerexpert | Oct 17, 2018

@america so happy for you!!

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