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.

mac47 | @mac47 | May 25, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Jump to this post

Amen! Has anyone come across a systematic way of evaluating where one might contract this? If there was a checklist of things to evaluate in your daily envoronment, it might help keep the reinfection rate down.

REPLY
nannette | @nannette | May 25, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

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@windwalker, aka Terri M., Yes, probably! I'm in Beaufort. I'm not sure how to contact each other but I'm sure we can figure it out. The reply buttons aren't working for me so I just go back to the main Mayo Connect main page to respond.
Nan

REPLY
anr38 | @anr38 | May 26, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Jump to this post

I live in Charleston SC and have recently been diagnosed with Bronchiectasis with MAC infection and just started on my 1st antibiotic Azithyromic which is already caused me problems and don't know how i'm going to be able to handle 2 other antibiotics along with this one for the next almost 2 years!!!!! I also have epilepsy and anytime i take anitbiotics is lower my medications and is already causing me to have more seizures! I just wander if it is worth the hardship of going thru these antibiotics side effects and just keep the infection?! and what are the chances of getting the infection again once or if you got it cleared up?

REPLY
anr38 | @anr38 | May 26, 2017
In reply to @macjane "I am just joining as I was diagnosed with MAC in January by University of Michigan...." + (show)
@macjane

I am just joining as I was diagnosed with MAC in January by University of Michigan. I had two awful experiences with meds and are due to start again. I am really scared. Thanks, Jane

Jump to this post

Me too! I was just diagnosed February 28th 2017 with Bronchiectasis and MAC- just starting 1st antibiotic and having problems! (but of course i have other healthy issues such as epilepsy and antibiotic doesnt work well with these seizure meds) Wish you all the luck you will need! stay strong!

REPLY
irene5 Irene Estes | @irene5 | May 26, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Jump to this post

I am so sorry! The way it has been explained to me several times is that over time MAC will continue to cause damage to our lungs, so in the "big picture" it is our best option. Yes there is, unfortunately, the chance of reinfectuon. Perhaps the doctor can change that med to clarithromycin. Feel better!

REPLY
janovr | @janovr | May 26, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Jump to this post

anr38....I was DX with MAC and Bron. in May, 2015.  I tried twice to take the medicine.  It put me in the hospital twice.   I was a healthy, active 78 year old at the time.  I am still fairly active at 80.   I was DX last May with COPD.  Never smoked.  My MAC specialist at Emory/Atlanta said for me, the cure was worse than the disease.    I go to Pulmonary Rehab twice a week.  Everyone is different.  I am pleased with my stability with this disease and try not to even think about it.  My doctor said this is a slow growing disease and I will die someday with this disease, but not from it.  I do not have my head stuck in the sand....I just refuse for this disease to define me and my life.    God bless you as you make this decision.     Jan/Ga.

REPLY
boomerexpert | @boomerexpert | May 26, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Jump to this post

I recommend getting a second and even third opinion on the need for antibiotics at this point particularly given your contraindicated seizure meds... some docs automatically put patients on the antibiotics even if not medically necessary at that time (I'm not yet on meds as my doc, who I found through ntminfo.org thus is well versed in NTM's, felt them unneeded as I have no symptoms as yet, and have some areas healing on their own and others cropping up which is how the infection works...) - what are your symptoms? If you are asymptomatic, get thee to another doc!

REPLY
terryb1 | @128128terry11t | May 26, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Jump to this post

What is the name of your MAC specialist at Emory? Thanks. Terry

REPLY
sherry72 | @sherry72 | May 26, 2017

I take another med that had to be incerased while on the antibiotics.

REPLY
1 reply
janovr | @janovr | May 26, 2017
In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)
@jennifernicole

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Jump to this post

Dr. Colin Swenson
Emory/ St. Joseph's

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