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 | Aug 24, 2016

Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers at the sept 17 workshop...list some more as you think of them....and anyone else.
I also am starting to think that more people have MAC but typical cultures...as was mine are not brewed correctly or long enough to show the MAC....so indeed there is more out there then is diagnosed.

terri

REPLY
4 replies
heathert | @heathert | Aug 24, 2016
In reply to @tdrell "Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers..." + (show)
@tdrell

Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers at the sept 17 workshop...list some more as you think of them....and anyone else.
I also am starting to think that more people have MAC but typical cultures...as was mine are not brewed correctly or long enough to show the MAC....so indeed there is more out there then is diagnosed.

terri

Jump to this post

thx @tdrell for attending this on our behalves, we do need new drugs, inhaled dugs or even a different way of thinking like inhaling good bacteria which control the MAC bugs, so they dont overgrow, this is possible and is being tested but we need it hurried up with more money, this could be an easy answer.

REPLY
boomerexpert | @boomerexpert | Aug 24, 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.

Jump to this post

All great stuff, Kay. And yes, researchers are clear that there's not only<br>many undiagnosed walking the world, but many who have been dx but because<br>there's no requirement to report cases as w/TB, no way to know how many.<br><br>What is known is that it's in the 10's of thousands, and growing<br>exponentially. As well, whereas MAC was an opportunistic disease confined<br>almost solely to HIV patients, it's now hitting the general population,<br>including people with healthy immune systems. Given the microbe is in everyone's water/soil, this is a potential epidemic in the making.

REPLY
heathert | @heathert | Aug 24, 2016
In reply to @tdrell "Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers..." + (show)
@tdrell

Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers at the sept 17 workshop...list some more as you think of them....and anyone else.
I also am starting to think that more people have MAC but typical cultures...as was mine are not brewed correctly or long enough to show the MAC....so indeed there is more out there then is diagnosed.

terri

Jump to this post

@tdrell luv the pic of you and your bestfriend!

REPLY
boomerexpert | @boomerexpert | Aug 24, 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.

Jump to this post

Oooops, forget to follow up on the point you made about the increasing older<br>population - that is huge with regard to infection rates going way up in the<br>coming years (again, according to the research).

REPLY
boomerexpert | @boomerexpert | Aug 24, 2016
In reply to @tdrell "Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers..." + (show)
@tdrell

Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers at the sept 17 workshop...list some more as you think of them....and anyone else.
I also am starting to think that more people have MAC but typical cultures...as was mine are not brewed correctly or long enough to show the MAC....so indeed there is more out there then is diagnosed.

terri

Jump to this post

Here's the latest research being done on inhaled meds science:<br>https://www.cosuspensiontechnology.com/distribution.html?source=PT3H44356<br><br>&WT.mc_id=PT3H44356&umedium=Paid%2520Search&uadpub=Google&ucampaign=Technolo<br>gy%2520Features&ucreative=Distribution&uplace=pulmonary%2520drug%2520deliver<br>y - much difficulty getting certain meds to the right targets in the lungs<br>with old methods.this is meant to address that problem.<br><br>Also, an abstract reviewing research done on inhaled antibiotics.<br>http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4028738/ <br><br>Stuck on the inhaled treatment for only those who have failed standard<br>treatment.need one that supplants standard treatment.<br><br> <br><br>Terri

REPLY
Katherine, Alumni Mentor | @katemn | Aug 24, 2016
In reply to @tdrell "Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers..." + (show)
@tdrell

Kay Strand....I will try...before l leave...take items/issues you posted and see if there might be answers at the sept 17 workshop...list some more as you think of them....and anyone else.
I also am starting to think that more people have MAC but typical cultures...as was mine are not brewed correctly or long enough to show the MAC....so indeed there is more out there then is diagnosed.

terri

Jump to this post

Terri, what a pretty "baby" you have! So glad you are going to this workshop for all of us .. what a great help to all of us! Knowledge is power!

Personally I have always thought that so many health issues both physical and mental are someday going to be linked with a genetic and then something that happens in our life be it a virus .. infection .. environmental or whatever. I LOVE C-Span books on Saturday and Sunday here in our area .. love listening to it all week end .. authors being interviewed about their books. Recently I listened as I went about my day to an author who discussed ONE area of research that is currently being researched .. that an INFECTION triggers various mental illnesses such as Schizophrenia and Bi Polar. Absolutely fascinating! Really made me think about our disease. I had TERRIBLE pneumonia in 2003 .. 5 rounds of antibiotics .. 3 of steroids .. really sick for three month. This was BEFORE I understood about our "Due Diligence" and all that we talk about here about taking good care of ourselves and getting a second opinion!

I have wondered .. DID this have anything to do with getting MAC/MAI .. trigger some genetic thing in me??

I know that I have had the "spit" test 23and Me that showed I have genetic lung issues. Hmmm?! Time will tell! So Terri, thank you for being our stand in .. come back to us with your good notes! Katherine

REPLY
boomerexpert | @boomerexpert | Aug 25, 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.

Jump to this post

A reminder to all that I started a discussion for just this purpose - to gather info from/for us on research and to influence much needed research on this disease - think of it as a repository for all our ideas that we can then use for researchers, for all research info any of us can find so it can be shared with all, and for ways to push for research on better treatments that are long overdue. Here's the link: https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=1#post-232039
If all of us use it, the info/ideas gathered will be invaluable for doing all we can to get far better treatments!

REPLY
Katherine, Alumni Mentor | @katemn | Aug 25, 2016

Hi Katherine, I am new here and was diagnosed with Bronchiectasis recently. I had a bronchoscopy a few weeks ago and I'm waiting for the results of a culture. So far the culture shows a strain in the TB family. I work as a preschool teacher and the doctor out of an abundance of caution said I should stay home until the final results are in. It's making me so nervous to think I could possible get someone else sick. I discovered this blog and your comments always seem so informed and positive that I wanted to reach out to you directly. I suffer from anxiety issues and this health situation feels so overwhelming. Honesty, at the moment I am more worried about other people's health than my own.

Thanks for your time!
Winnie
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Winnie, I am SO glad you found our Forum! Welcome! I am answering you on our Forum because you will find ALL of us will be here for you on this journey .. I KNOW it is scary right now .. BUT we have all been on it!

Here is what I would do if I was sitting in your shoes. Because of your work and life situation .. NO reputable doctor is going to get ticked off if you want to get a second opinion .. SO:

1.google your zip code, INFECTIOUS DISEASE DOCTOR .. MAI/MAC
2. put the each name into google. Find out where they went to school .. the tougher school they got into .. in my opinion the brighter they probably are! See if they have MAI/MAC as an area of clinical interest. See if you can find one that DOES show up as knowing something about MAI/MAC
3. Call your current doctor and request a copy of any/ALL medical records to be available for you to PICK UP by a certain date (if they say they will be mailed you can’t depend on it) .. AND that the sputum culture results be forwarded to the M.D. that you are getting the second opinion from. WHEN you go to pick up the medical records you can sign any/all necessary papers needed. If necessary they can email you any forms and you can sign/email them back if they require them in advance.
4. Call the Infectious Disease Doctor .. ask how many MAI/MAC patients the doctor has worked with in the past twelve months. If a reasonable number .. request a second opinion .. tell them it is urgent as you are a preschool teacher etc .. throw yourself on their mercy to get a quick appointment! Tell them you have had a bronchoscopy etc and want a second opinion regarding your work situation.

The reason I am telling you this is .. IF you have MAI/MAC .. it IS NOT contagious!! A second opinion with an Infectious Disease Doctor MAY see different things than your current doctor does that MAY NOT necessitate your taking a two month leave of absence from your job. Because that is how long it takes for a MAI/MAC culture to come in .. two months.

Winnie, you would not be in the field you are in if you were NOT so caring .. but PLEASE don’t be anxious .. if it is MAI/MAC is NOT contagious .. the journey will not be fun .. but it IS bearable .. AND we will all be here for you. We have all been down this road .. I have come out on the other side .. just like you will. Just put one foot in front of the other .. “put your energy into what you can control .. and let go of what you CAN’T control”. Ie .. put your energy into getting that second opinion to confirm IF you can continue to work .. LET GO of knowing what “critter” is in your body right now. You can’t control that right now .. it will come in it’s own good time. I know it is a tough time right now .. but keep coming back to the Forum .. we are all here for you! Sending you a BIG Hug! Katherine

REPLY
Kathryn S Wilbur | @kwilbur | Aug 26, 2016

Winnie, it is nice to hear from another teacher. I, too, have bronchiectasis and have had that for two years. As teachers, our constant talking can make our symptoms act up during the day. I carry a handkerchief in my purse and use it discreetly. I have never been questioned by students or any other person at school for that matter. I just have to cough out phlegm at random times during the day. I may have MAC - I had "evidence" of MAC in my last chest scan - but I have yet to find out what is going on for sure. I, too, suffer from anxiety. Seems to go with the territory doesn't it?

So do what Katherine has suggested and enjoy each day. This is a wonderful forum and you will get answers here..

REPLY
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