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.

virtuous69 | @virtuous69 | Jul 7, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

My mother had TB as a German war bride when I was born. Was in Jewish sanitorium in Denver for a year and was smart enough to tell birthing docs she would not nurse me. I worked for a hospital for a time and have always tested negative. I,m concerned that the disease can spread by drinking water???

REPLY
virtuous69 | @virtuous69 | Jul 7, 2017

Sorry folks, I'm referring to the MAC, not TB unless they are related?

REPLY
8 replies
irene5 Irene Estes | @irene5 | Jul 7, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

You will only get MAC if you are susceptible. MAC is everywhere in the environment.

REPLY
tdrell | @tdrell | Jul 7, 2017
In reply to @virtuous69 "Sorry folks, I'm referring to the MAC, not TB unless they are related?" + (show)
@virtuous69

Sorry folks, I'm referring to the MAC, not TB unless they are related?

Jump to this post

Virtuous69....TB and NTM (MAC is one of the 171 types) are cousins. A third is Leprosy.
The sanitarium your war bride mother went to for treatment of her TB evolved into what is now National Jewish Health. It's name has gone thru changes as it has refined its mission that began in 1899.TDrell

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 7, 2017
In reply to @katemn "@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as :..." + (show)
@katemn

@imeehaigt .. imee, you are SO lucky!! Philippines is listed on the company website as : country safe to purchase from. Lucky you .. it really does help! I prefer the 75mg time release .. can you get that form there? Curious .. what is the cost? Hugs! Katherine

Jump to this post

 @katemn Do you know if they sell it in France? I have friends in France
now. Or Canada? We should get a case and sell to our members.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 7, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

@virtuous69 Most households have NTM in the drinking water. Well water does
not (usually).
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 7, 2017
In reply to @virtuous69 "Sorry folks, I'm referring to the MAC, not TB unless they are related?" + (show)
@virtuous69

Sorry folks, I'm referring to the MAC, not TB unless they are related?

Jump to this post

@virtuous69 When
I refer to NTM, that is MAC.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 7, 2017
In reply to @virtuous69 "Sorry folks, I'm referring to the MAC, not TB unless they are related?" + (show)
@virtuous69

Sorry folks, I'm referring to the MAC, not TB unless they are related?

Jump to this post

@tdrell Terri,
that was an interesting factoid. I had not known that. Incidentally, my
Grandmother was in a sanitorium for years fighting TB. She was always sickly for
the rest of her life.
 

REPLY
Cindy Courtney | @cindyrnc | Jul 7, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

Jump to this post

Irene,

Thank you for posting this information.  This is absolutely correct.  Only those who are immunosuppressed get MAC.

Cindy

 

 

REPLY
Cindy Courtney | @cindyrnc | Jul 7, 2017
In reply to @virtuous69 "Sorry folks, I'm referring to the MAC, not TB unless they are related?" + (show)
@virtuous69

Sorry folks, I'm referring to the MAC, not TB unless they are related?

Jump to this post

They are related.

Cindy

 

 

REPLY
View MoreView Less
Please sign in or register to post a reply.