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.

tdrell | @tdrell | Sep 2, 2016
In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)
@tdrell

Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs of varying colored mucus nightly...2-5 hour sessions only at night and going to a variety of good Drs...and having all kinds of tests...a bronchoscopy washing revealed mycobacterium Avis complex. It is now at State Lab for sensitivity tests.i will have appt with my pulmonologist here in Wisconsin ( and the infection control Dr he is referring me to) but I am guessing I will consider second opinion with Dr A or go to a specialist at National Jewish...any names there to suggest?? My daughter lives in Denver so that is a plus. Again thanks to all of you...glad I found this site tonight....BLESS Google!

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Kay S......what made you prefer going to Mayo rather than National Jewish in Denver?? How long did it take to get the appt at National Jewish? Terri S

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tdrell | @tdrell | Sep 3, 2016
In reply to @katemn "@katiemknor .. Winnie!! I just thought of some GREAT advice I remembered posted by our member..." + (show)
@katemn

@katiemknor .. Winnie!! I just thought of some GREAT advice I remembered posted by our member Liliane .. I am copying it below!! Look at her advice to request a BRONCHOSCOPY .. that might give you a quicker opinion?? Not sure .. but might be an option for the second opinion?? Just wondering .. been scratching my head for you!! Hugs to you! Katherine p.s reading the past post may give you other ideas!!
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Posted by @liliane, Thu, Aug 18 at 12:12pm CDT

Hello Kathryn!
I am glad you have joined this very supportive forum. You say that your pulmonary scans show evidence of a possible MAC/MAI infection. There is a protocol followed by pulmonologists in order to properly diagnose and treat this disease.
My suggestion for you is to request a bronchoscopy, followed by a bacterial culture of the fluids and, if positive for Mycobacterium avium, an antibiotic sensitivity test in order to determine which drugs will be effective in your case.
I am a 59 year old dentist, with a background in microbiology, and I have been diagnosed with MAC/MAI earlier this year. I am on my fourth month taking the three recommended antibiotics, Rifampin, Clarithromycin and Ethambutol. I have noticed a decline in energy since starting my therapy. I still manage to workout daily and carry on my normal activities. You are not alone in this struggle.Here you will find good suggestions on how to best tolerate your prescribed medications and how to be a good, well informed self advocate. Best wishes to you in your journey. There is light at the end of the tunnel.
Liliane

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Liiane...my pulmonologist followed the above protocol with the bronchoscopy which l had done july 20,2016....the lab sent the specimen which had MAC to the state lab where it show sensitivity to Clarithromycin...nothing said re Rifampin or Ethambutol...l am thinking that those are NOT antibiotics hence no reason to do sensitivity tests on them???
thanks TerriD.

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tdrell | @tdrell | Sep 3, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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Kay how will the doctors know how the drugs are working when you see them on 10/6 if l may ask?
terri d

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Elaine | @laneyk | Sep 3, 2016
In reply to @katemn "@katiemknor .. Winnie!! I just thought of some GREAT advice I remembered posted by our member..." + (show)
@katemn

@katiemknor .. Winnie!! I just thought of some GREAT advice I remembered posted by our member Liliane .. I am copying it below!! Look at her advice to request a BRONCHOSCOPY .. that might give you a quicker opinion?? Not sure .. but might be an option for the second opinion?? Just wondering .. been scratching my head for you!! Hugs to you! Katherine p.s reading the past post may give you other ideas!!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++=

Posted by @liliane, Thu, Aug 18 at 12:12pm CDT

Hello Kathryn!
I am glad you have joined this very supportive forum. You say that your pulmonary scans show evidence of a possible MAC/MAI infection. There is a protocol followed by pulmonologists in order to properly diagnose and treat this disease.
My suggestion for you is to request a bronchoscopy, followed by a bacterial culture of the fluids and, if positive for Mycobacterium avium, an antibiotic sensitivity test in order to determine which drugs will be effective in your case.
I am a 59 year old dentist, with a background in microbiology, and I have been diagnosed with MAC/MAI earlier this year. I am on my fourth month taking the three recommended antibiotics, Rifampin, Clarithromycin and Ethambutol. I have noticed a decline in energy since starting my therapy. I still manage to workout daily and carry on my normal activities. You are not alone in this struggle.Here you will find good suggestions on how to best tolerate your prescribed medications and how to be a good, well informed self advocate. Best wishes to you in your journey. There is light at the end of the tunnel.
Liliane

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The Rifampin and Ethambutol are specifically TB antibiotics for MAC or TB.<br>Rifabutin is in the same class as Rifampin and is the one I was given,<br><br>

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Elaine | @laneyk | Sep 3, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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Hi, I'm Elaine. I had a very large accumulation in my upper lung. I had chest X-rays done every month for 6 months. Each month there was clearing. Now I have some scarring that will always be there. As a retired X-ray technologist, I could recognize the difference. My first film was frightening.

EK

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tdrell | @tdrell | Sep 3, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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Elaine...so that is how progress (hopfully) is done..sequential chest xrays? how convenient to have the expertise from your Professional expertise.. Scary also.. All my chest xrays are negative..CAT scans also...only the bronchial washings from the bronchoscopy gave the answer that l had MAC....and the cough/ mucus symptom of a 2 year duration. So if and when l go on the meds....will my...hopeful progress....only be measured when the cough/mucus leaves and l have a repeat bronchoscopy and specimens obtained from that...looking to see if MAC still there??
thanks
terri D

REPLY
Elaine | @laneyk | Sep 3, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

I also had sputum cultures. After 3 months of treatment, cultures negative<br>for bacteria. Had culture done after 1 year still negative. I am 2 weeks<br>off medicine. Will return for X-ray in I month. I have not asked about<br>possibility of relapse or how rapidly it grows in that case.<br>EK<br><br>

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tdrell | @tdrell | Sep 3, 2016
In reply to @kaystrand "Re the conference. Perhaps we need some statistical data gathered to try to help understand why..." + (show)
@kaystrand

Re the conference.

Perhaps we need some statistical data gathered to try to help understand why some people get MAC and most don't. There must be more commonalities to all of this that is being missed. If we knew the cause, perhaps a better cure would become more apparent. Perhaps reoccurance could be stopped.

We are getting the same drugs they've been using to treat NTMs for years with no advances. There is no critical mass to our numbers, and so no money in trying to figure this out.
I think a better look at the possibity of "hidden" MAC, all the folks walking around with a cough, tired, not yet diagnosed. Also, they talk 8% growth rate. As our population ages with the boomers, is this growth rate perhaps much higher?

What about surgery. It's seems to be a pretty sure cure. Why isn't more done? Maybe too expensive or only allowed if drugs fail? There are some people on here MAC free for a few years, but let's face it, with drugs only it frequently comes back. Surgery seems to be an endgame for the disease. I'd like to get rid of this for my future years, not live on drugs that have many side effects long and short term.

It seems someone must be asking these questions and gathering info for the conference, but perhaps not. I cannot go due to a previous trip plan.

I'm sure someone going to the conference with MAC can better formulate these ideas.

Thanks. Comments and additions welcome.

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Kay....l printed out this excellent list of questions to take with me to the conference...also added the great additional ones from Boomerexpert and Paula.and Heather...
terri D

REPLY
Kay Strand | @kaystrand | Sep 3, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

EK
Did you have CT scans or X-rays?
What meds are you taking? Sorry if you've already said that!

They give me sputum cultures and ct scans. Hoping mine clears up, and all of us who are taking all of these meds! Good to hear your cultures are negative after 3 months.
Kay S

REPLY
Elaine | @laneyk | Sep 4, 2016
In reply to @oceanbliss "Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is..." + (show)
@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn't get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

Jump to this post

I had an X-ray at my regular doctor because after 3 weeks of seeing him and taking antibiotics, my wbc was elevated. Chest X-ray then revealed large accumulation of infection. I was sent to hospital for 10 days of IV antibiotics and followed by 10 more days IV antibiotics at home. A CT scan was done in hospital. Kept seeing that pulmonologist for follow up X-rays every week. When no improvement, I went back to regular dr. And asked him to refer me to Vanderbilt. In the meantime I found out I had tested positive for MAC while in hospital but the results had been overlooked. From the records I carried, Vanderbilt called my regular Doctor and I was referred for treatment to another doctor. One month later, I finally was started on the treatment. 900 mg Ethambutol, 600 mg Rifabutin and 200 mg Azithromycin everyday. After 1 month of treatment, there was a big improvement on X-ray. I completed 15 months of treatment 2 weeks ago. As I look back, I think this had been going on for about 6 months before I realized something was wrong. Circumstances kept me from realizing that I was sick.

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