(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 group.

@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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@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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@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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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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I meant to say couldn’t get in until 2017

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@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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@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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Welcome @oceanbliss! I see you addressed @katemn specifically in your post. Katherine is travelling at the moment with no Internet access. This community is strong and I see you’ve connected with @kaystrand. Thanks Kay.

Oceanbliss, I recommend you take the appointment with Dr. Vassallo at Mayo Clinic. As Katherine points out in this message http://mayocl.in/2cap3wY “…in my last appointment [Dr. Aksamit] said he now works .. as Mayo Clinic does .. with a “Team” of Pulmonary people in MAI/MAC. …That is a MUCH better approach. Truth is I think it is pretty tough to get into him now .. AND my understanding as doctors at Mayo work as a team and discuss things with each other .. the team approach.”

In other words, seeing Dr. Vassallo is a direct conduit to Dr. Aksamit and a whole team of expertise. Let us know how the appointment goes. I also encourage you to read all the messages in this forum, and ask any questions you have of the members to help you prepare for your appointment. Have you got any questions for us now?

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@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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I have not been firmly diagnosed yet for MAC but I already got the gloomy story of the side effects of medications. I wish you better advice and help with Dr. Vassalo and know that those on this forum really know what they are talking about. They have gone through this and have strength. Best, Kathryn

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@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,
So glad you found this forum! You will be in great hands at the Mayo. If they are too far to travel for your follow-up care there are other good doctors out there. One source to find them is on this website https://www.ntminfo.org/patients/physician-referral-list where they have doctors listed by state that are well versed in dealing with MAC and other NTM’s. It’s also a good website overall. Good luck. Hang in there and keep in touch.
Janet

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@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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Nate, Oceanbliss appt is in 2017, long way off. How does she get in sooner, aside from cancellations?

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@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,
I think she may have meant she couldn’t get in to see Aksamit until 2017 but she’ll see Dr. Vassalo later this month. Not positive but I think that’s what she was saying.
Janet

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@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 have just finished my treatment for MAC. The meds were not as bad as
what I had read about. I took Ethambutol 900 mg, 200 Azithromycin, and 600
mg Rifabutin for 15 months everyday. The worse thing was feeling tired. I
just paced myself and was able to resume most things. I had double whammy
as my husband passed away at the same time that I was so sick before
diagnosis and treatment was started. I was not diagnosed until about 3
months after becoming sick. Misdiagnosed and mistreated for 2 months.
Culture was positive but doctor did not look at the results. After repeated
chest x-Rays with no change got my records and sought another
pulmonologist. 1st month after drugs started there was a big change in
X-ray. Do the treatment. We only have one set of lungs and they are vital.
EK

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