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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

Jump to this post

@jkiemen Jo Ann, do you go to a teaching institution to see your I.D. dr? Or is he a local private practice? Thanks!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

Jump to this post

@lindam272 Linda, is your I.D. dr a private practice physician? Thanks!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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@cbest Hooray Cheryl! We love good news! Congrats!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

@cbest Cheryl, what about your shortness of breath, has that improved?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 17, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

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Hi @jentaylor, I see you were asking about stem cell therapies. @windwalker is quite right that

The use of regenerative medicince (stem cells) is still in early days for lung regeneration. You can read more about Mayo's research here: http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/lung-regeneration

There is a great deal of hope and a great deal of hype about stem cells. That is why Mayo Clinic offers a free consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 18, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

@colleenyoung Hi Colleen. that is interesting, thank you for the info.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 18, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

@colleenyoung I just read the link that you posted. May have to look into signing up for clinical trials. I think it is an amazing prospect.

REPLY
unicorn | @unicorn | Aug 18, 2017

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...

REPLY
43 replies
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

 

I did once out of the blue. It was scary.  I was told that if it stops just to call and let my pulmonologist know.  He said it was part of Bronchiectasis. 

I know about the being afraid thing. I always think, what if it happens when I am here or there.

 

JO Ann Kiemen

 

REPLY
ling123 | @ling123 | Aug 18, 2017

@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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