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!

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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.

ling123 | @ling123 | Aug 18, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

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@unicorm, I remember you mention coughing up blood, going to ER initially and deciding to stop going later on. I thought hemoptysis had stopped since then. Hare you been coughing up more blood since your earlier posts?

REPLY
Jo Ann K | @jkiemen | Aug 18, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

No just once do far.  (knock on wood)

I had a bronchoscopy last week to get a sputum culture because I could not produce anything with 2 sputum inductions.  I am certain it is still there because

of the CT scans I have had. I guess they want to get that important culture and I think send it to Jewish National.

Jo Ann Kiemen

 

REPLY
unicorn | @unicorn | Aug 18, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

Yes coughed up some a few months ago, but nothing like the 2 initial episodes. So bronchiectasis, interesting. I thought it was the little bugs eating the capillaries!

REPLY
unicorn | @unicorn | Aug 18, 2017
In reply to @ling123 "@unicorn Yes, I have coughed up blood. The first time was in September 2014. It was..." + (show)
@ling123

@unicorn Yes, I have coughed up blood. The first time was in September 2014. It was completely out of the blue. There was a lot of blood so I went to ER and stayed there overnight. I continue to cough up blood for hours. They thought I had TB. But the sputum tests came back negative for TB but positive for MAC. It was very scary the first time with the amount of blood that came out of me and with me not knowing what the cause was. After the initial episode, I went over 2 years without see any blood. I've always had excessive mucus that cause me to cough and clear my throat a lot even before being diagnosed with Brochiectasis and MAC. The second time I saw blood in the mucus that I coughed up was late February of this year when I had laryngitis and later on bronchitis. But the amount of blood was minimal, more like clots floating in the sputum. But it did last 2-3 days of on and off of seeing the clots. This time I did not go to the ER because I already know the reason and because the amount was trivial. I did though make an appointment to see my pulmonary doctor. He prescribed 10-day worth of antibiotics. I have been fine since then although there is still a lot of mucus that I would cough up, especially when I first get up in the morning or after I exercise. My pulmonary doctor does not believe in prescribing big 3 the minute his patients are diagnosed with MAC because the negative effect of these drug could outweigh the benefit to the patients. After giving me the pros and cons of taking these drugs, he let me make my own decisions. I chose not to take it and I have not changed my mind because, other than coughing up a lot of mucus, I'm able to stay active and live a normal life. @unicorn, do you have other lung-related health issues? I mean other than Bronchiectasis and/or MAC or MAI (I can't recall what you have)? Is your condition bad enough that your doctor thinks that you will need those drugs to function?

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No other problems, I rarely get sick. I try to live a very clean lifestyle, exercise, organic foods, No alcohol, rarely desserts, I do try to avoid crowds, especially xmas parties, (everybody sick!) I know I've said all this before, I'm trim, not skeletal, anymore, love to shop! Keeping a positive attitude BUT....I think about the blood and have decided it is not the way to go, cannot choke to death, scary. So if it starts to happen more frequently, I may just put on a red party dress, and fabulous shoes, and attend a big xmas party!!!

REPLY
unicorn | @unicorn | Aug 18, 2017

Thanks guys, hope to hear from more people that caught u blood, yes I have bronchiectasis and MAI.

REPLY
ling123 | @ling123 | Aug 18, 2017
In reply to @ling123 "@unicorn Yes, I have coughed up blood. The first time was in September 2014. It was..." + (show)
@ling123

@unicorn Yes, I have coughed up blood. The first time was in September 2014. It was completely out of the blue. There was a lot of blood so I went to ER and stayed there overnight. I continue to cough up blood for hours. They thought I had TB. But the sputum tests came back negative for TB but positive for MAC. It was very scary the first time with the amount of blood that came out of me and with me not knowing what the cause was. After the initial episode, I went over 2 years without see any blood. I've always had excessive mucus that cause me to cough and clear my throat a lot even before being diagnosed with Brochiectasis and MAC. The second time I saw blood in the mucus that I coughed up was late February of this year when I had laryngitis and later on bronchitis. But the amount of blood was minimal, more like clots floating in the sputum. But it did last 2-3 days of on and off of seeing the clots. This time I did not go to the ER because I already know the reason and because the amount was trivial. I did though make an appointment to see my pulmonary doctor. He prescribed 10-day worth of antibiotics. I have been fine since then although there is still a lot of mucus that I would cough up, especially when I first get up in the morning or after I exercise. My pulmonary doctor does not believe in prescribing big 3 the minute his patients are diagnosed with MAC because the negative effect of these drug could outweigh the benefit to the patients. After giving me the pros and cons of taking these drugs, he let me make my own decisions. I chose not to take it and I have not changed my mind because, other than coughing up a lot of mucus, I'm able to stay active and live a normal life. @unicorn, do you have other lung-related health issues? I mean other than Bronchiectasis and/or MAC or MAI (I can't recall what you have)? Is your condition bad enough that your doctor thinks that you will need those drugs to function?

Jump to this post

@unicorn Yes, coughing up blood is part of Brochiectasis and MAC. I believe both can cause coughing up blood. If you do not have other lung-related illnesses and your immune system is not compromised, just keep doing what you are doing, exercise and eat healthy. Don't use up too much of your emotions and energy worrying about dying because you will most likely not die of Bronchiectasis unless you have other underlying issues that may worsen because you have Bronchiectasis. Since the big 3 have given you so much grief, stopping them may be a very good decision. Now you can concentrate on maintaining your physical and mental strength and not be distracted and derailed by all the side effects, especially some of the serious long term negative effect on your body. I would worry THAT a whole lot more than worrying about dying of Bronchiectasis or choking to death by the blood that you cough up. I'm not a doctor. But my pulmonary doctor agrees with me that I do not need to be put on the big 3 unless I develop other health problems later on that would affect the functions of my lungs. He said we would deal with "later on" when it happens not before.

REPLY
heathert | @heathert | Aug 18, 2017

This is some research going on in nz for Pseud, which seems connected to MAC,but may be helpful for MAI etc also.
http://www.massey.ac.nz/massey/about-massey/news/article.cfm?mnarticle_uuid=71387739-9DE9-BE0F-D019-C7CC807DDDF4

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2017
In reply to @ling123 "@unicorn Yes, I have coughed up blood. The first time was in September 2014. It was..." + (show)
@ling123

@unicorn Yes, I have coughed up blood. The first time was in September 2014. It was completely out of the blue. There was a lot of blood so I went to ER and stayed there overnight. I continue to cough up blood for hours. They thought I had TB. But the sputum tests came back negative for TB but positive for MAC. It was very scary the first time with the amount of blood that came out of me and with me not knowing what the cause was. After the initial episode, I went over 2 years without see any blood. I've always had excessive mucus that cause me to cough and clear my throat a lot even before being diagnosed with Brochiectasis and MAC. The second time I saw blood in the mucus that I coughed up was late February of this year when I had laryngitis and later on bronchitis. But the amount of blood was minimal, more like clots floating in the sputum. But it did last 2-3 days of on and off of seeing the clots. This time I did not go to the ER because I already know the reason and because the amount was trivial. I did though make an appointment to see my pulmonary doctor. He prescribed 10-day worth of antibiotics. I have been fine since then although there is still a lot of mucus that I would cough up, especially when I first get up in the morning or after I exercise. My pulmonary doctor does not believe in prescribing big 3 the minute his patients are diagnosed with MAC because the negative effect of these drug could outweigh the benefit to the patients. After giving me the pros and cons of taking these drugs, he let me make my own decisions. I chose not to take it and I have not changed my mind because, other than coughing up a lot of mucus, I'm able to stay active and live a normal life. @unicorn, do you have other lung-related health issues? I mean other than Bronchiectasis and/or MAC or MAI (I can't recall what you have)? Is your condition bad enough that your doctor thinks that you will need those drugs to function?

Jump to this post

@unicorn I love your attitude Christa! To be on the safe side, try Googling 'Interventional Radiologist'. That is a procedure to get if you have a LOT of bleeding in your lungs. Another member had posted something about that not too long ago. She said you should call your local hospital to see if their ER is equipped to do that procedure in case you ever need it. When the dust settles here from returning texts; I will look it up also - we can compare notes.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@jkiemen Hi Jo Ann. Please keep us posted.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@unicorn Christa, it happened to me twice in my MAC 'career'. The first time it happened, it freaked me out big time. I was on that phone so fast to my pulmonologist! It is very frightening to see blood on your tissue. I learned more about it, and have had only one other episode. Did not worry in the least as it is part of having bronchiecstasis. A LOT of blood is worrisome and should be checked out. Sometimes that is a sign of active infection. Just stay on top of it is all. XXOX

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