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.

boomerexpert | @boomerexpert | Oct 21, 2016
In reply to @colleenyoung "Hi all, I just came across the journal article led by Mayo Clinic's Dr. Timothy R...." + (show)
@colleenyoung

Hi all,
I just came across the journal article led by Mayo Clinic's Dr. Timothy R. Aksamit. http://www.resmedjournal.com/article/S0954-6111(13)00379-X/fulltext

The article is structured around questions that I have seen asked quite often in this forum. It takes these questions and outlines the treatment and research developments at the time of writing, which was 2014. Here's the intro:

"This review will utilize essential questions about nontuberculous mycobacterial (NTM) lung disease to succinctly address important new developments in the pathogenesis, diagnosis and management of NTM lung disease with a focus on practical information and “bottom line” answers.

1)What do I tell my patients who ask, “where did I get this infection” and, “should I take showers”?
2)What is the connection between bronchiectasis and the acquisition of NTM lung infection?
3)What other factors are important in the pathogenesis of NTM lung disease?
4)Why does it seem that am I seeing more new NTM lung disease patients?
5)Why is the diagnosis of NTM lung disease so complicated and does the diagnosis of NTM lung infection obligate specific treatment?
6)Unlike traditional tuberculosis, what is behind the irrelevance of most in vitro susceptibility testing reports for NTM infections?
7)Is there anything new for the management of patients with Mycobacterium avium complex lung disease? How does the radiographic appearance influence treatment?
8)Is there anything new for the management of patients with Mycobacterium abscessus lung disease?
9)What about the management of other NTM respiratory pathogens?
10)Is there a role for the use of macrolide monotherapy for non-cystic fibrosis bronchiectasis?"

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This is terrif! Thanks, Colleen!

REPLY
david1952 | @david1952 | Oct 21, 2016
In reply to @katemn "David, I also want to welcome you to our place of support and information .. it..." + (show)
@katemn

David, I also want to welcome you to our place of support and information .. it is a great place to keep coming back to! It sounds like you have a plan ongoing to beat this thing .. and are working your plan! Good for you! I am so glad you are reading the previous posts .. LOTS of good information and support .. I think it will really help you on your journey .. plus keep us posted on how YOU are doing! Keep coming back!

You may have read that after thirty months on 4-5 antibiotics .. I have now been "stable" since May 2014 .. SO there IS light at the end of the tunnel!! I travel .. have fun and have a nice life! BUT like you I also developed Bronchiectasis .. frankly I didn't even realize it .. paid ZERO attention to it until really after I became stable .. read the fact as an after thought on my Mayo Clinic notes .. AND paid more attention because I kept coughing so much AFTER I was stable from MAC!! I asked about the Bronchiectasis .. did some reading .. AND realized my focus had been so much on just healing from the MAC that I hadn't given a thought to the scarring of my bronchial tubes!

I asked Dr. Aksamit at Mayo Clinic about it .. and if I am remembering correctly .. his response was that the two (MAC and Bronchiectasis) go so frequently together that frequently the doctors cannot tell which came first .. the chicken/egg thing. That the scarring of the bronchial tubes results in a pooling of the mucus .. which means it does not cough up as well .. which then becomes a perfect breeding ground for mycobacterium. Hope I am paraphrasing that correctly. I understand that the scarring of the bronchial tubes shows up on my CT scans.

I have started placing a BIG glass of filtered water right by my toilet (not to be gross) .. but that big glass reminds me to DRINK LOTS OF WATER DAILY! I also daily take an over the counter “Maximum Strength Mucinex" to loosen the mucus and exercise as much as possible to keep my lungs and body healthy.

I truly understand about the coughing! When people feel badly for me for the coughing .. I tell them .. it is GOOD for me .. it is keeping my lungs healthy .. PLUS for a 73 year old woman "I have abs of steel .. despite NO 73 year old woman should have abs of steel!" It always makes them laugh .. but truly .. in time the coughing is like the old isometric exercising .. your core muscles will become SO strong .. you no longer will hurt. The only time I get in trouble is if the coughing gets too bad I can strain an upper should muscle .. now that does hurt! I take anti inflammatorys until it quiets down .. what is .. is! Hope you find some of this helpful.

Sending you a hug .. I know it is tougher in the beginning! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

I found this following link helpful .. that included the below info : http://www.uchospitals.edu/specialties/lung/conditions/bronchiectasis/

Patients are also encouraged to drink lots of fluids to keep secretions flowing and to exercise frequently to help clear the lungs and maintain cardiovascular health. Many patients also benefit from frequent, even constant, antibiotic use, often delivered directly to the lungs with a nebulizer, as well as medications to dilute mucus, dilate the airways and decrease inflammation.

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Thanks Katherine! I have been to some voice instructors and speech path people. They have given me exercises to do and I try to (some of the time! lol). I too have found the best therapy is to stop talking or indicate to people my voice is sore . They are very understanding. I live in Sioux Falls, South Dakota, home of Denny Sanford who gave the largest gift to a Medical hospital ever - $400 million dollars. So we have great doctors, and a few have even come over from Mayo Clinic!

REPLY
Katherine, Alumni Mentor | @katemn | Oct 21, 2016
In reply to @katemn "David, I also want to welcome you to our place of support and information .. it..." + (show)
@katemn

David, I also want to welcome you to our place of support and information .. it is a great place to keep coming back to! It sounds like you have a plan ongoing to beat this thing .. and are working your plan! Good for you! I am so glad you are reading the previous posts .. LOTS of good information and support .. I think it will really help you on your journey .. plus keep us posted on how YOU are doing! Keep coming back!

You may have read that after thirty months on 4-5 antibiotics .. I have now been "stable" since May 2014 .. SO there IS light at the end of the tunnel!! I travel .. have fun and have a nice life! BUT like you I also developed Bronchiectasis .. frankly I didn't even realize it .. paid ZERO attention to it until really after I became stable .. read the fact as an after thought on my Mayo Clinic notes .. AND paid more attention because I kept coughing so much AFTER I was stable from MAC!! I asked about the Bronchiectasis .. did some reading .. AND realized my focus had been so much on just healing from the MAC that I hadn't given a thought to the scarring of my bronchial tubes!

I asked Dr. Aksamit at Mayo Clinic about it .. and if I am remembering correctly .. his response was that the two (MAC and Bronchiectasis) go so frequently together that frequently the doctors cannot tell which came first .. the chicken/egg thing. That the scarring of the bronchial tubes results in a pooling of the mucus .. which means it does not cough up as well .. which then becomes a perfect breeding ground for mycobacterium. Hope I am paraphrasing that correctly. I understand that the scarring of the bronchial tubes shows up on my CT scans.

I have started placing a BIG glass of filtered water right by my toilet (not to be gross) .. but that big glass reminds me to DRINK LOTS OF WATER DAILY! I also daily take an over the counter “Maximum Strength Mucinex" to loosen the mucus and exercise as much as possible to keep my lungs and body healthy.

I truly understand about the coughing! When people feel badly for me for the coughing .. I tell them .. it is GOOD for me .. it is keeping my lungs healthy .. PLUS for a 73 year old woman "I have abs of steel .. despite NO 73 year old woman should have abs of steel!" It always makes them laugh .. but truly .. in time the coughing is like the old isometric exercising .. your core muscles will become SO strong .. you no longer will hurt. The only time I get in trouble is if the coughing gets too bad I can strain an upper should muscle .. now that does hurt! I take anti inflammatorys until it quiets down .. what is .. is! Hope you find some of this helpful.

Sending you a hug .. I know it is tougher in the beginning! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

I found this following link helpful .. that included the below info : http://www.uchospitals.edu/specialties/lung/conditions/bronchiectasis/

Patients are also encouraged to drink lots of fluids to keep secretions flowing and to exercise frequently to help clear the lungs and maintain cardiovascular health. Many patients also benefit from frequent, even constant, antibiotic use, often delivered directly to the lungs with a nebulizer, as well as medications to dilute mucus, dilate the airways and decrease inflammation.

Jump to this post

Boy, David, it just seems like you are doing everything you can possibly do .. turning over every rock .. trying your best .. doing your best. Sounds like your best bet is just to keep doing what you're doing .. save your voice for the essentials. You are indeed lucky to have access to good doctors .. here on the Forum we hear form many people without that access who are greatly frustrated. You can count your blessings .. which sounds like you are already doing! Keep up the good work! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Oct 21, 2016

Colleen, this article was really interesting .. hopefully not too frightening for new people .. but yet again .. ALL knowledge is power! I know I learned a few new things .. and confirmed a few decisions .. such as continuing the use of the new disposable shower head that I mentioned in a previous post. Expensive .. but I plan to write it off on my taxes as a medical expense. I have now used it for some time .. like it just fine .. this article confirmed for me that there is NO proof water from showers are the issues but I would rather be safe than sorry. Personally I tried the bleaching the showerhead approach .. AND my showerhead was NOT a cheap one but because to make an all metal shower head it would be too heavy (I had researched and talked to manufactures) .. different parts are plastic. SO when I used bleach .. the silvered plastic portion "bleached" off .. looked just awful! So this disposable solid white shower head is my choice!

Also learned more about my MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES than I knew before. Interesting "stuff"! Thanks for the heads up! Katherine

REPLY
lisa2860 | @lisa2860 | Oct 23, 2016

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

REPLY
18 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 23, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

Welcome to Connect, Lisa. I moved your message to the MAC/MAI forum so that you can meet so many other members, like @katemn @jillnc @tdrell @Paula_MAC2007 and so many more. Many of the people here have been on antibiotics for MAI and can share their experiences with you and hopefully provide some clues about the chest pain you are experiencing.

REPLY
Katherine, Alumni Mentor | @katemn | Oct 23, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

Hello Lisa, Welcome to our Forum .. so glad you found us! First of all I would suggest that as you find the time and energy that you read through the past pages of the posts .. you will find SO much helpful information and support .. remember .. knowledge is power in our disease!

Now to your concern .. my question is .. how much do you cough? I can only speak for myself .. but MY upper back pain has come from the horrific constant coughing! I joke that I have "abs of steel and that no 73 year old woman should have abs of steel" .. but after coughing constantly since 2011 (diagnosed in 2007) my stomach muscles are very strong .. BUT I periodically strain my upper back muscles from the coughing. When this happens it REALLY hurts! Is this anything like what you are describing .. or is your upper back pain different?

I have not had chest pain or difficulty breathing .. have always worked out so my lungs are pretty strong. Maybe someone else can jump in and talk about this. Personally a doctor telling you CHEST pain is STOMACH issues sound weird. I also have GERDS .. THAT results in STOMACH pain .. NOT chest pain!! Anyone else with any thoughts?

Lisa, I hope others will jump in with some thoughts .. just know that we will all be here to support you on your journey .. keep coming back with your questions. We may not be able to answer them but we can relate whatever our own experience have been .. and be here for you. Sending you a hug in this tough time! Katherine

REPLY
lisa2860 | @lisa2860 | Oct 24, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

Hello and thank you for your response. I have been so frustrated for the past 5 years over my symptoms especially when doctors tell me they are not related to myMAI. We know our bodies better than they do and I know I'm not right.
As far as my cough, it's not too often, sometimes in the morning I cough for a few minutes until I'm up and about. During the day occasionally but never an on going cough. I do have a horse voice a lot and trouble clearing my throat. Doc said....post nasal drip. Don't believe that for a minute! But my main concern is my chest pain/tightness. It starts from my upper belly, more like between my breast and goes all the way to my throat. I have hiatal hernia but very mild. I eat healthy and light and most nights I don't eat dinner. Or I eat my last meal at 4 or 5 due to my work schedule. My MAI is in my right lung and the back pain is in the center and right side of my back.
I was asked by my doctor to go for another cat scan after completing my 1 1/2 year treatment. I refused do to the level of radiation. Also because I didn't feel any better. Anyone out there have any comments about having too any ca scans? Also, I live in the New York area, anyone know of a good doctor I can see for this?
Thank you and bless us all!

REPLY
Kay Strand | @kaystrand | Oct 24, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

I was diagnosed w MAC in July from a CT scan, but probably had it for a year.
First, I have horrid throat clearing, I do have post nasal drip, and Mayo MN gave me nasal drops and I'm having a PH Impedence test for reflux. Anyone had that test?

The docs said it's 25-30 years for radiation to ever cause a problem. I figure they have to see if my MAC Cavity is growing to know if it's better. Last time the wall was thinning. I have upper right lung, one cavity, weird.

So, I can't relate to the cough but the throat clearing I can, have it much of the day.

And, I'm old enough that 25-30 years will make me really old, so no worries about ct scan.

Kay S

REPLY
cowboy1997 | @cowboy1997 | Oct 24, 2016
In reply to @lisa2860 "I'm a 56 year old female diagnosed with mai five years ago. Since then I have..." + (show)
@lisa2860

I'm a 56 year old female diagnosed with mai five years ago. Since then I have had chest pain that feels like a tightness and difficult breathing or more like I have to try to breathe. I also have terrible upper back pain. My doctor tells me I'm fine and said it has to be Gastro intestinal issues. I have had every test related to gastrointestinal issues and they are fine. I had a full cardio work up and I'm good there too. I swear my pain is from my lung issue. But I can't convince my doctor what I feel is not normal. I went on antibiotics for the mai for a year and a half and I feel the same, no better. Now I'm starting to feel worse. I'm 5 ' tall small framed and was 102 pounds when diagnosed. Now I am 109.
Does anyone out there have these symptoms?
Thanks, Lisa

Jump to this post

Don't know anything about this disease but I had a chronic dry cough every day for 18 years before I was diagnosed by an Allergist with Reflux! I didn't believe him I never had heartburn in my life. But he was correct! Sorry it took them so many years to diagnose me because I suffered a lot but never gave up!<br><br>

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