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.

maryjo2sell | @maryjo2sell | Jun 10, 2017

Hi. I have been having trouble getting into the discussions. I write, but never see my comments. Are you seeing anything I wrote on levoquin or nebulizer recently?
Thx. Hope this shows up. Fondly, Mary Jo

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2017
In reply to @maryjo2sell "Hi. I have been having trouble getting into the discussions. I write, but never see my..." + (show)
@maryjo2sell

Hi. I have been having trouble getting into the discussions. I write, but never see my comments. Are you seeing anything I wrote on levoquin or nebulizer recently?
Thx. Hope this shows up. Fondly, Mary Jo

Jump to this post

Maryjo, I have not seen any posts of yours except this one.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 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

Hello Christa, So glad you are feeling a little less fearful. I see you
have been conversing with Katherine; she is a wealth of knowledge and comfort. I
remember the first time I coughed up blood. I was terrified! All I could think
of was Doc Holiday in the movie &apos;Tombstone&apos;! I have not had that happen in
several years now. I live near the ocean too. I feel like it has greatly
improved my health. I moved here five yrs ago and I feel so much better. 
Hugs - Terri M.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

Jump to this post

That&apos;s right Terri. 120 or higher is what is recommended.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

Jump to this post

Like!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

Jump to this post

Hello, yes, that helped. Thank you. - Terri M.
 

REPLY
unicorn | @unicorn | Jun 10, 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

Me too! I thought of Doc Holliday, the lunger, we are lungers. haha Why do you not bleed anymore? Did you do something? did it stop on it's own?? xo

REPLY
cila | @cila | Jun 10, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
@unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

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Hello Unicorn, I'm sorry about how you feel. I know its gets on to us sometimes especially when the meds seems to be not working. Please don't think about dying and don't give up, hopefully it will get better. I have so many frustrating situation since I got diagnosed a year ago and some of it is fear and scared. I never knew anything about panic attack until I found out that I have bronchiectasis and MAC. Its not easy but you have to fight it and don't let this bugs win. I will have you in my prayer and please try to look at the bright side of life. Blessing and prayers. Cila

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 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

It stopped on it&apos;s own probably due to being on monthly maintenance
antibiotics. For example, I am on my 10 day cycle of 500 mg Cipro. Next, I will
be on a 28 day run of Tobramycin. I take these two drugs alternately. Prior to
these two, I alternately took Cipro & Doxycycline. I caught pseudomonas last
fall, so that is why they switched me to tobramycin. Honestly, I feel better now
than I have in the last ten yrs. Still have fatigue, but at least I am not
hacking all of the time.
 

REPLY
Katherine, Alumni Mentor | @katemn | Jun 10, 2017

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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