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.

heathert | @heathert | Aug 28, 2016
In reply to @katemn "Dear All, FYI .. I will be out of town with limited internet access from 8/31..." + (show)
@katemn

Dear All, FYI .. I will be out of town with limited internet access from 8/31 to 9/18.

PLEASE watch for new people .. help and support them as I know you will! But especially during my absence! We have always been a caring community so I worry that someone will feel afraid and alone during my absence. Just watch out for each other. You will all be in my thoughts .. sending you all an advance hug! Katherine

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Hi Katherine my name is Heather, love the snow flake analogy, very serene!

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Katherine, Alumni Mentor | @katemn | Aug 28, 2016
In reply to @katemn "Dear All, FYI .. I will be out of town with limited internet access from 8/31..." + (show)
@katemn

Dear All, FYI .. I will be out of town with limited internet access from 8/31 to 9/18.

PLEASE watch for new people .. help and support them as I know you will! But especially during my absence! We have always been a caring community so I worry that someone will feel afraid and alone during my absence. Just watch out for each other. You will all be in my thoughts .. sending you all an advance hug! Katherine

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Heather, thank you for adding your name! Now I can add a very pretty name to that pretty face! Hugs to you! Katherine

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cowboy1997 | @cowboy1997 | Aug 28, 2016
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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I live in the Brandon/Litha area. Do you have this disease

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Kathryn S Wilbur | @kwilbur | Aug 28, 2016
In reply to @katemn "@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive..." + (show)
@katemn

@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive attitude is so appreciated. I understand your suggestion of getting a second opinion. I failed to give you an accurate picture of my medical journey.

Originally I started with a pulmonologist referred to me by my ENT that did nothing but scare me (not needed here, I'm already scared). Fortunately for me my brother in law taught at Tulane 's medical school and referred me to his former colleague Dr Covitz a Pulmonologist who now teaches and works in Chicago (post Katrina). I'm comfortable with my doctor, but now realize I need a good infectious disease doctor...it sounds so scary. If it turns out to be MAC I agree that I need a doctor that specializes with MAC patients.

The waiting for test results and having time on my hands is the worse part for me. I'm 50 years old and I've always been super active. I've been taking several long walks during the day and look for inspiration...in people like you! Thanks! Winnie
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@katiemknor
Thank you for sending me the above private message Winnie. However, I hope you don’t mind that I have placed it on our Forum because I think you have things to add to our storehouse of knowledge as you go along on your journey .. plus I see that Kathryn from our Forum has ALREADY reached out to you to support you! That is the wonderful way our Forum works! Private messages truthfully kind of defeat the wonderful purpose of our sharing Forum .. hope you are ok with that! I think in time you will be really happy with the kindness and sharing you will find from others here on our Forum .. PLUS I am quite sure you will “play it forward” as you are a little further along on YOUR journey! That is just how this Forum has worked .. wonderfully!

Now to details .. I am SO glad you have at least started with a pulmonologist .. BUT in NO way should they have scared you!! Phooey!! I am SOOO glad Kathryn responded to you .. SHE is a teacher .. REALLY in your same boat .. AND still teaching!! You two should really try to stay in touch.

I really think if you “put your energy into what you can control” which is researching a good MAC doctor to get a second opinion .. that will help fill the time .. take you mind off the wait .. plus be sure to read the back pages of this Forum. That is doing your “Due Diligence” in case it is MAC .. so you will be educated about the process. Knowledge truly IS power .. take that power BACK .. into your OWN hands .. educate yourself so that you know what is happening to your body. It truly does help!

Winnie, I would encourage you to post here on the Forum .. once you do .. you will start to receive any new messages from other people .. you will then be kept in the "loop" .. how 'bout that! Neat system huh?

Then keep coming back to the Forum .. really good people here who will be here for you whatever the outcome of the journey. Sending you a Hug! Katherine

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Winnie, I so understand the worst part is waiting and not having the same energy. I go day by day. Forced myself to mow the lawn today after sleeping 13 hours. Now time to get ready for school. Be easy on yourself. We care.

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Kathryn S Wilbur | @kwilbur | Aug 28, 2016
In reply to @katemn "Dear All, FYI .. I will be out of town with limited internet access from 8/31..." + (show)
@katemn

Dear All, FYI .. I will be out of town with limited internet access from 8/31 to 9/18.

PLEASE watch for new people .. help and support them as I know you will! But especially during my absence! We have always been a caring community so I worry that someone will feel afraid and alone during my absence. Just watch out for each other. You will all be in my thoughts .. sending you all an advance hug! Katherine

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What great advice! I was divorced right before my lung issues started to act up. I am also, at 64, thinking about reinventing myself... somehow - to find joy. Writing and working outside helps me.

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Paula_MAC-2007 | @Paula_MAC2007 | Aug 29, 2016
In reply to @katemn "Hello All, I am going to say something that may not go over well .. BUT..." + (show)
@katemn

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my "Due Diligence" .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your "Due Diligence"! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was 'BECOMING MY DISEASE"! It became my FOCUS in life.

I had to have a "Coming to Jesus" moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I'm just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don't allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn't staring me In the face .. it doesn't exist .. denial has worked wonders since 2007 and I've live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

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@katemn (Katherine),
I so agree with your message about not letting us 'become our disease'.
While technology may be a wonderful thing, we can get so wrapped up in searching online for medical information or the messages on this blog, that we let disease encompass our day. There is a life to live out there. I don't ever want NTM, MAC, Bronchiectasis or any other disease define who I am. No way! 🙂
Paula

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Lisa Y | @tutti | Aug 29, 2016
In reply to @katemn "Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit ....." + (show)
@katemn

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar .... we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

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I see Dr. Christine Hirsch, she is an infectious disease dr @ University Hospital in Cleveland. I like her very much, she knowledgeable and very caring. She working with Dr. Jeremy Clain, he's a pulmonary dr I saw at the Mayo Clinic. Together they are working on the best plan of action. Right they are still checking me every 3 mos. I feel very lucky to have them for my care. Good Luck! Let me know how your appt goes. Tutti

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oceanbliss | @oceanbliss | Sep 1, 2016

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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18 replies
oceanbliss | @oceanbliss | Sep 1, 2016

I meant to say couldn't get in until 2017

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Kay Strand | @kaystrand | Sep 2, 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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Oceanbliss,
Sorry you had a very negative doctor that gave you no hope. That is wrong on many levels!!

Usually if you keep calling Mayo they have several cancellations and you get in much sooner.
Never heard a doc say not to pursue treatment for this. I just was diagnosed in July 16 and am taking the big 3. I was nauseated at first, they take adjustment, and some folks can't tolerate them. But they usually work, so why would this doctor not have you even try?

I go to Mayo, but I hear Minn Heart and Lung is good. I know Park Nicollet ID treats with the big 3 also. Sorry I don't have names, but tell either place you want a doc that has treated MAC.

If you are not in Minneapolis I would call Pulmonary and ID docs and find ones who DO treat MAC.

You can get well from all I'm reading, that's MY plan. All the best to you.

Kay S

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