1. < MAC & Bronchiectasis

(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

boomerexpert | @boomerexpert | Oct 18, 2017
In reply to @liangctoo "Hi all, I'm excited to have found this group. I am posting on behalf of my..." + (show)
@liangctoo

Hi all,

I'm excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she's been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those - as they gave her other things - and in the last month or so, has been home healing up. She's struggling with the disease and I'm not sure how to help her. If anyone has advice or insight to our questions, I'm thankful in advance:

- While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
- Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
- My mother feels weak, has no energy, and says she's very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she's gotten worse than before; it's hard to tell.
- My mother also has depression. It's hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I'm going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
- Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.

Thank you,
Charmaine

Jump to this post

@nick52 @liangctoo a good therapist will do that...

REPLY
ling123 | @ling123 | Oct 18, 2017
In reply to @liangctoo "Hi all, I'm excited to have found this group. I am posting on behalf of my..." + (show)
@liangctoo

Hi all,

I'm excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she's been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those - as they gave her other things - and in the last month or so, has been home healing up. She's struggling with the disease and I'm not sure how to help her. If anyone has advice or insight to our questions, I'm thankful in advance:

- While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
- Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
- My mother feels weak, has no energy, and says she's very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she's gotten worse than before; it's hard to tell.
- My mother also has depression. It's hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I'm going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
- Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.

Thank you,
Charmaine

Jump to this post

@liangctoo , I can't remember if you told us your mom is already seeing a therapist or not. But I agree with @boomerexpert . If she already sees a therapist, you should ask her to look into whether her meds for depression could cause some of her physical symptoms. But if she is not on any meds for depression, then her symptoms could very well be caused by her depression. She should be treated for this mental illness right away.

REPLY
joan912 | @joan912 | Oct 18, 2017

General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6 months, once a year, or ?

REPLY
4 replies
barbjh | @barbjh | Oct 18, 2017
In reply to @joan912 "General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6..." + (show)
@joan912

General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6 months, once a year, or ?

Jump to this post

I would be curious too!

REPLY
suenfl | @suenfl | Oct 18, 2017

Moving to North Tampa. Does anyone know of a good MAC doctor?

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 19, 2017
In reply to @joan912 "General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6..." + (show)
@joan912

General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6 months, once a year, or ?

Jump to this post

@joan912 , Hello Joan. My doctor at the Mayo Clinic said he doesn't like a patient to have a CT Scan more than once a year, unless neccessary. CT scans are very powerful and can cause changes to your cells and DNA, so it is wise to only do get one infrequently. There is info on the precautions of scans on Google. Just be sure to go to ligit sites like Mayo, Johns Hopkins, etc. so that you get the real scoop.

REPLY
joan912 | @joan912 | Oct 19, 2017
In reply to @joan912 "General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6..." + (show)
@joan912

General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6 months, once a year, or ?

Jump to this post

Thank you, Terri. I think that's prudent. I believe certainly no more than once every 6 months, and preferably once/year.

REPLY
ling123 | @ling123 | Oct 19, 2017
In reply to @joan912 "General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6..." + (show)
@joan912

General question: how often did you get a CT Scan for MAC and/or bronchiectasis? Every 6 months, once a year, or ?

Jump to this post

@joan912 My pulmonary doctor does not like to order CT scan frequently either. I had one done when I first diagnosed. The second one was ordered last week after 3 years of the initial diagnosis. He does, however, order a chest X-Ray to be done every time before I go to see him (which is every 6-12 months) so he can make the comparison.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 19, 2017

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

REPLY
8 replies
boomerexpert | @boomerexpert | Oct 19, 2017
In reply to @suenfl "Moving to North Tampa. Does anyone know of a good MAC doctor?" + (show)
@suenfl

Moving to North Tampa. Does anyone know of a good MAC doctor?

Jump to this post

@suenfl although Terri is correct re: Gainesville & Jacksonville, I'm aware of the hours-long drive they entail. That said, there's a dearth of good doctors of any sort in the Tampa Bay area...this is where the mediocre ones go to pretend to work...try docs associated with Tampa General/USF Med school...

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