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.

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?

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@unicorn, Christa, I want you to pay attention to what Ling's doctor did. (@ling123) He put her on a 10 day dose of an antibiotic because it is typical that an infection will cause bleeding in the lungs. I am sure he did that as a safety precaution.

REPLY
ling123 | @ling123 | 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?

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Although I coughed up huge amount of blood the first time in September 2014, I was not on any meds and there was no more episode of hemoptysis for the next 2.5 years. When I started seeing small amount of blood in my sputum again earlier this year, I was having infections in my lungs brought on by laryngitis and bronchitis. The 10-day antibiotics (don't remember the name of it) was prescribed to counter these infections which worked to stop the hemoptysis. @windwalker Terri is right. Infections can cause such bleeding. While trying to live an active and healthy life, we also need to try hard to avoid getting these infections. It's easier said than done as we all want to live a normal life and have normal social interactions with people around us. But being mindful never hurts.

REPLY
Lisa Y | @tutti | Aug 20, 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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I was diagnosed with Bronchiectasis/microbacterium abscessus in Sept 2015. The symptom that brought me to the Dr.was bleed in my mouth. I can't say I coughed it cause I didn't. I felt congestion in my throat and when I cleared my throat that is when I saw the blood. Not a huge amount but enough to know this is not right. It rarely happened but I went to the Dr. Immediately. I went to Drs at University Hospital in Cleveland (ID) and Mayo Clinic (pulm). They had me on a watch, I went every 6 mos. In April 2017 in had a episode that produced a lot more blood than I'd ever had. It only lasted a few minutes but my Drs decided it was time for me to start treatment. Very scary for me. I had to leave my business cause I new I couldn't perform my job while doing these treatments. I was right. I just finished 8wks of amikacin and cefoxitin through a pick line and azithromycin orally. I had a severe allergic reaction after 6 wks. and GI bleed after 8wks. I had a headache and felt yucky through pretty much that whole treatment. Monday I start amikacin inhaled through a nebulizer and as long as my blood count is on the rise will also start linezolid orally along with the oral azithromycin. Not looking forward to this next bout. I'm a nervous reck, really trying to stay positive. Sure hope going through this helps. I would definitely love to hear some positive outcomes. I don't think I've heard any if I have it's very few. I just want to get this behind me and live my life again. I guess because I've been extremely healthy my entire life that this is so hard on me. Praying for a positive outcome for all of us.

REPLY
Kay Strand | @kaystrand | Aug 20, 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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Terri
Have you heard anything about pseudonomas being in lettuce and other vegetables? They add them to some soils in organic growing it appears. Just wondering if you know anything about that or if anyone else has heard? We don't need these bacteria in our food supply!!

Thanks, Kay S

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 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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@tutti Hello Lisa, I understand your fear of going on that treatment plan. Personally, I would be more fearful of having m. abscessus and NOT being on a treatment plan. If you are losing precious lung tissue due to this infection, then yes, you need to do something to stop it in it's tracks. I went to the D.C. NTM Convention last spring, and the experts there had positive things to say about the use of inhaled amikacin. I believe the inhaled version is fairly new.
I know that it is especially a bummer to go from a healthy person your whole life, and then get blind-sided with this tenacious disease. I don't know how much you already know about avoiding further infections, but I will say it. Take a bath instead of a shower, do NOT get into swimming pools or hot tubs, do not visit hospitals or nursing homes unless absolutely nessessary. Do not handle potting soil. There are over a billion pseudomonas microbes per tablespoon in the bag of soil. You must be more careful about adding to your bacterial load. I did not see you mention doing the inhaled sodium chloride treatments. If they don't have you doing those, ask why not.
Lisa, I hope you visit our forum on a regular basis. When we combine our experiences, it helps us to learn about our disease, and also to cope better. I wish real hugs could be sent over the internet; I'd be giving you one right now! - Terri

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 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

@tutti, Lisa, I just re-read your last post. I feel like you have already been through hell with those 8 weeks of treatment; and that the next three antibiotics should be a piece of cake. (provided you are not allergic to any of those) XXO Terri

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 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

@kaystrand Hi Kay. I had heard of mycobacteriums being on raw vegetables. That is why it is recommended to eat mainly cooked veggies. I had not heard of pseudomonas being added to the soil for organic growing. Where did you see this?

REPLY
Kay Strand | @kaystrand | Aug 21, 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

Terri
I was on several websites reading and don't even recall. I guess more cooked veggies. Fruit grows off the ground primarily. We should be safe there. I eat a lot of salads but will cut back. Like we always say, we can't live in a bubble....these dang Mycobacterium!!
:-/
Kay Strand

REPLY
Kay Strand | @kaystrand | Aug 21, 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

Terri
My doctor at Mayo (pulmonary) says that stomach acid kills Mycobacterium. She said I should be concerned about vaporized water and inhaling it, and doesn't even think boiled drinking water is necessary.
She said avoid showers, hot tubs, humidifiers, mists of any kind (my facial person used a steam machine on my face! No more!) She said avoid breathing in any kind of water or dust to your lungs.
I do not have reflux, (she tested me with the 24 hr impedence test) but possibly reflux can be aspirated I guess is the thought.
If I listen to her, I don't have to be concerned about water filters and just need to be cautious of inhaling water and dust as much as possible. Not sure that's enough!

What do your docs tell you about this subject?

Thanks
Kay

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 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

@kaystrand Hi Kay, My doctor told me nothing at all on how to avoid re-infection. (but I still adore the guy, he was just all about treating) I learned everything I know from Google searches, this forum, and attending the NTM Conference. I had never heard that stomach acid kills mac. I have heard that you can get mac infection from inhaling stomach acid from reflux that may contain mac from drinking water. Arrggg! Sigh, I used to enjoy a good facial with steam. Like you said, we can't do that any longer. Another thing we must avoid is foot pedicure baths at a salon. No matter what kind of disinfectants they use, they still test positive for billions of mycobacteriums that include mac and pseudomonas. Bummer!

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