(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@jilltpayne

Hi. I had difficulty getting to this discussion as MAC was not on the list of things. I am on a three drug regimen 3 times a week to start. The day after i take the drugs, I have tremendous fatigue and do not feel like doing anything – at least until later in the day. I don’t see anything on line that would help me know what to do about this except suffer! They all tell you about side effects, but nothing about what to do to counteract them. I take probiotics twice a day, but also do not have much appetite.
I know it could be worse, but I need to get at least a little more energy.

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Hi Jill: I remember that tiredness. I would get up in morning, have breakfast and then go back to sleep! So unhealthy. I drank a little coffee, and just kept walking my dog, so at least I was doing something. I remember having to eat more bread and pasta to try to gain weight, but I got kind of skeletal. After awhile even the probiotics did not work, food just moved through system too fast. I am off pills now as MAC kept coming back, using aerobics and nebulizer. My infectious disease doc At Massachusettes General wants to put me on antibiotics every day , but I think they will kill me, so I have to have a conversation with her. It’s a process, we have to try everything. Nothing seems to work 100% Try this, then try that, talk to your docs A LOT, find out alternatives. Stay on this site for tons of info. xo Christa

REPLY
@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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Consider it written down as a question to be asked. I am presently living in the NYC area in a home but hope to move to an apartment in the Atlanta, Ga area at the end of December. I, too, have been a teacher (college) for anyone interested in keeping tally of teachers/nurses in our population. Scary to ponder retirement at the end of the Fall semester. I am already obsessing on the fact that I will not be in control of the water temperature! Building was erected in 1987 so pipes etc are old. If you have any other info on your shower faucet that would be helpful for them to know at NJ (manufacturer, etc.) , please feel free to private email me if you wish. What a pleasure to do a little something for you who has done so much for the rest of us. Terry

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@katemn

Dear All, I am finding my Aerobika really works great hooked up to my saline solution as instructed by my Pulmonologist .. PLUS I also use it after using my inhalers .. PLUS I use it immediately after I exercise .. I find right after I exercise I am really able to bring up some “nasty” stuff with the Aerobika. THEN when reading ” Member advice from 2017 Conference: “They stressed the importance of keeping your nebulizing equipment clean by use of boiling or using bottle sterilizers.” .. it made sense to me that it would OBVIOUSLY also apply to my Aerobika. Since I do NOT sterilize my nebs daily .. and I have become SO conscious of sterilizing since being diagnosed with 3 MORE bacteria .. I decided to NOT stick with just ONE Aerobika .. but since they are expensive .. I did some research and decided to share my research. I am NOT recommending this to ANYONE .. just saying it worked for me .. AND if you decide to purchase from Ebay .. ONLY purchase from the SAME vendor on Ebay that I did .. I purchased from him twice (purchased from-100% rating: ravenator123 ) and the product was EXACTLY the same as the one I purchased from the Medical Supply Co.

AEROBIKA-EBAY http://www.ebay.com/itm/Aerobika-Oscillating-Positive-Expiratory-Pressure-Therapy-PEP-Device/222365799192?_trksid=p2047675.c100005.m1851&_trkparms=aid%3D222007%26algo%3DSIC.MBE%26ao%3D2%26asc%3D38530%26meid%3D770f957ccb25404b97e7b52a01662bde%26pid%3D100005%26rk%3D1%26rkt%3D6%26sd%3D162365627793 purchased from-100% rating: ravenator123 ( 1146 ) $54 w.shipping 6/19/17 $64. w/shipping

AEROBIKA-MEDICAL SUPPLY http://www.aerobika-therapy.com/order-today/ ordered 2/25/17 $90.00

Hugs to all! Katherine

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Katherine, The booklet that came with my Aerobika sites the Electronic Steam Sterilizer (baby bottle sterilizer) as the recommended method. It says, “The four disassembled parts may be disinfected using an electronic steam sterilizer for baby bottles, following the manufacturer’s instructions for use (e.g. AVENT Electronic Sterilizer). The disinfection cycle should last approximately 15 minutes. Allow the parts to cool and air dry thoroughly before reassembly.” I’m only microwaving for 6 mins but maybe need to up that. It seems like the other components for the nebulizer should be okay. They are all plastic. One of the alternative methods described is the microwave steam bags but says to use distilled water. “For HIGH LEVEL DISINFECTION: If clinically necessary for the patients’ disease state, the device may be cleaned after each use and disinfected once each treatment day. STERILE distilled water must be used for rinsing. To sterilize distilled water, boil it for 5 minutes.” Hope that helps.

REPLY
@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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Irene5…and Crude!!!

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@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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@jentaylor,
Jen, I hear you. I have intentionally not traveled to Africa , Thailand, and a
few other places because of the weird crap you can pick up, i.e. elephantitis,
and that other one you can get from dung beetles, etc. I have watched "The
Monster Inside Me", a show about mycobacteriums, and strange parasites picked up
in foreign countries. My immune system is so weak, that I feel like I'd be a
target in a strange land. People DO come back from travels abroad with
illnesses that drs here are dumbfounded by.
 

REPLY
@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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@jkiemen,
Jo Ann, I had GERD for years without a dr ever suggesting that I may have it.
(these were pulmonologists who should have been aware that this is common with
many COPD diseases.) I would often complain to my drs that my throat burned
constantly and they never even took notice. It wasn't until I went to the Mayo
that they listened, took a scan and sure enough, I had esophageal erosion going
on! From acid reflux! It is not that uncommon, so it really pissed me off that
it went undetected or treated for so long; even though I complained about
it.
 

REPLY
@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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@jkiemen,
Jo Ann, I am a carrier for that gene. YES! There is a connection. They haven't
figured out exactly what that connection is. I want to go to an institution that
is HIGHLY SPECIALIZED in that field. I spoke with a Dr. who does specialize in
Alpha-! at the D.C. Conference this past spring about it. I asked her about
correlations with that gene. She said yes, it is known that 'carriers' can 
and do get just as ill as full blown ZZ people. Because that info is still 'off
label', so to speak, there is not enough scientific studies yet on that. But,
they have a lot of 'carriers' like myself that are in dire straights concerning
their lungs. – Terri M.
 

REPLY
@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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@jkiemen are
you a carrier of the Alpha-1 gene?
 

REPLY
@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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@unicorn Great
advice Crista.
 

REPLY
@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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@boomerexpert LOVE WHAT YOU SAID!
 

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@katemn

Dear All, maybe this is against the rules .. BUT I just got this from a friend in Australia .. thought it was so uplifting I thought I’d share it .. if I get reprimanded .. promise not to do it again! Hugs to all!

THE BACK NINE

I FIRST STARTED READING THIS EMAIL & WAS READING FAST UNTIL I REACHED THE THIRD SENTENCE. I STOPPED AND STARTED OVER READING SLOWER AND THINKING ABOUT EVERY WORD. THIS EMAIL IS VERY THOUGHT PROVOKING. MAKES YOU STOP AND THINK.
READ SLOWLY!

AND THEN IT IS WINTER

You know … Time has a way of moving quickly and catching you unaware of the passing years. It seems just yesterday that I was young, just married and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.

But, here it is… The back nine of my life and it catches me by surprise…How did I get here so fast? Where did the years go and where did my youth go?

I remember well seeing older people through the years and thinking that those older people were years away from me and that I was only on the first hole and the back nine was so far off that I could not fathom it or imagine fully what it would be like.

But, here it is…my friends are retired and getting grey…they move slower and I see an older person now. Some are in better and some worse shape than me…but, I see the great change….Not like the ones that I remember who were young and vibrant…but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we’d become.

Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore… it’s mandatory! Cause if I don’t on my own free will… I just fall asleep where I sit!

And so…now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!! But, at least I know, that though I’m on the back nine, and I’m not sure how long it will last…this I know, that when it’s over on this earth…it’s over. A new adventure will begin! Yes, I have regrets. There are things I wish I hadn’t done…things I should have done, but indeed, there are many things I’m happy to have done. It’s all in a lifetime.

NOTE: So, if you’re not on the back nine yet…let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish in your life please do it quickly! Don’t put things off too long!! Life goes by quickly. So, do what you can today, as you can never be sure whether you’re on the back nine or not!

You have no promise that you will see all the seasons of your life….so, live for today and say all the things that you want your loved ones to remember…and hope that they appreciate and love you for all the things that you have done for them in all the years past!!

“Life” is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one. LIVE IT WELL! ENJOY TODAY! DO SOMETHING FUN! BE HAPPY ! HAVE A GREAT DAY Remember “It is health that is real wealth and not pieces of gold and silver.

LASTLY, CONSIDER THIS:
~Your kids are becoming you……but your grandchildren are perfect!
~Going out is good.. Coming home is better!
~You forget names…. But it’s OK because some people forgot they even knew you!!!
~You realize you’re never going to be really good at anything like golf.
~The things you used to care to do, you aren’t as interested in anymore, but you really don’t care that you aren’t as interested.
~You sleep better on a lounge chair with the TV ‘ON’ than in bed. It’s called “pre-sleep”.
~You miss the days when everything worked with just an “ON” and “OFF” switch..
~You tend to use more 4 letter words … “what?”…”when?”… ???
~You notice everything they sell in stores is “sleeveless”?!!!
~What used to be freckles are now liver spots.
~Everybody whispers.
~You have 3 sizes of clothes in your closet…. 2 of which you will never wear.

~~~But Old is good in some things: Old Songs, Old movies, and best of all, OLD FRIENDS!!

Stay well, “OLD FRIEND!” Send this on to other “Old Friends!” and let them laugh in AGREEMENT!!! It’s Not What You Gather, But What You Scatter That Tells What Kind Of Life You Have Lived.

TODAY IS THE OLDEST YOU’VE EVER BEEN; YET THE YOUNGEST YOU’LL EVER BE, SO ENJOY THIS DAY WHILE IT LASTS

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@irene5 Yep!
That is why it is called 'present'.
 

REPLY
@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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 @tdrell She really could!
 

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