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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Katherine, Alumni Mentor | @katemn | Nov 7, 2016
In reply to @nnassiri "Dear Katherine, and all. My wife had been diagnosed few days ago with MAC. She had..." + (show)
@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

Jump to this post

Boomer, if you read the info on this unit on Amazon.com you will find it is primarily to remove things like fluoride .. NOT mycobacterium. If I was you I'd do some research on mycobacterium. In my research on shower heads I was told to actually replace them monthly .. there was no way to effectively remove/filter the mycobacterium as well as these shower heads .. they are used in hospitals. Just my opinion .. hate to see you be so smart about your system .. then defeat it with filters than are not working?

One source: http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm466963.htm
Best to you .. Katherine

REPLY
boomerexpert | @boomerexpert | Nov 8, 2016
In reply to @nnassiri "Dear Katherine, and all. My wife had been diagnosed few days ago with MAC. She had..." + (show)
@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

Jump to this post

Thanks, and thanks for letting me know which system you're using, which, I noted only after I asked is a individual filtering device for drinking water...I have Pure T filters in a whole-house system...but I will check w/them to see if these filters, which cost around $90/per can be cleaned...

REPLY
boomerexpert | @boomerexpert | Nov 8, 2016
In reply to @nnassiri "Dear Katherine, and all. My wife had been diagnosed few days ago with MAC. She had..." + (show)
@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

Jump to this post

Thanks, K...see above...this is not what I have, as I agree, most filters do not rid water of bacteria & viruses... why I have the 2 I have in my whole-house system @ 0.2 microns as recommended by Nat'l Jewish - filters out all bacteria & viruses...

REPLY
tdrell | @tdrell | Nov 8, 2016

Everyone and Katemn....update....I got the call from the schedule person Brittany at National Jewish Health....i am now scheduled to see Dr Heuitt there January 5 to the 13th.

So....please post general type questions on this site so l can take and hopefully get answers to while l am there...

ALso...I started with Local ID doctor who ordered Mycobacterium Cultures and smears...I brought it in Mid October...found out today it did grow MAC and that they sent it to National Jewish for drug sensitivity. In Feb of this year my internist ordered a sputum culture....it was negative....now l know why....the order has to say "for Mycobacterium"....vs not saying it. different methods used then in the labs.
It was the july bronchoscope washing that grew the MAC. tdrell

REPLY
imeehaigt | @imeehaigt | Nov 8, 2016
In reply to @katemn "Hello @imeehaigt (do you have a first name .. seems so much more personal!) .. SO..." + (show)
@katemn

Hello @imeehaigt (do you have a first name .. seems so much more personal!) .. SO glad you found us! Hmmm .. your situation sound a bit complex .. I feel because of your braces. Based on my own and everyone else's on our Forum's experience .. that darn Mycobacterium is a sneaky little varmit who just loves to hide in strange places! Just don't have a clue if the braces are an issue or not .. leave that to the doctors!

I think if I was sitting in your shoes .. your having already gone through antibiotic treatment .. I would decide to do my "Due Diligence" and get a good second opinion from an Infectious Disease doctor who is REALLY up on MAC. You should be googling first: Infectious Disease Doctors in your area .. then calling and asking "How many MAC patients have you treated in the past 12 months?".

When you have scouted out that doctor .. FIRST .. request "Any and All" medical records from any/all doctors who have treated your lungs in the past .. go PICK them up yourself!! That makes sure the records don't get lost in the shuffle. THEN start asking the above questions from this new doctor to really figure out what is going on with your body. You and I are not doctors .. you need proper guidance to make an educated decision on what you want to do.

Before you contact doctors I would especially recommend an article I just recently happened upon  .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed.  It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation.  I have put the link below:
http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
BUT you are given just one body in this lifetime .. one set of lungs .. only YOU can take care of them .. no one else is going to care as much as you do. YOU have to take care of you! With what you have going on .. if it was me .. I'd pursue what I'm suggesting .. but that is only me. You are only 40 .. a long time to live in that body .. take good care of it! A good friend of mine chose to get braces in her mid 50s! If you need to remove your braces temporarily for your long term health .. that could be a choice you make?

Truthfully .. I wouldn't think day/night shifts would make a difference .. UNLESS it affects your sleeping and you are not getting proper rest. Sleep is VITAL for good health. In terms of mucus .. I am not recommending it but I read:
For Bronchitis "This Mucinex medicine really helped me out with a bronchitis attack. I have been suffering with acute bronchitis for about 3 weeks now, after taking all of the medication that my doctor prescribed I still have no relief. After reading reviews I decided to give Mucinex (liquid) a try, to my surprise it really helps to bring up all of that sticky mucus that was stuck in my lungs. Although I'm not fully well yet, I can see better days ahead!"

I use what is kind of a SUPER Mucinex to liquefy the mucus that I got in Vienna from a doctor. Unavailable in the USA .. but I get it whenever I travel .. it really helps me cough up the sputum.. Remember that collected sputum is a breeding ground for MAC .. we want to get it up as much as we can .. I call the coughing my "lung hygiene" .. I know it is embarrassing .. but it really is a necessary function for our healthy lungs!

Hope you find some of this helpful .. sending you a hug in this tough decision time! Keep coming back .. your will find everyone very kind and supportive of your journey! Katherine

Jump to this post

Thank you soo much for the advise. I already removed my braces and repeated another sputum culture and will get the result after 42 days. And by the way I forgot to mention that when I was first diagnosed with MOTT my pulmonologist did not request for specie identification which according to my infectious disease specialist they should identify the specie first for prescribing antibiotics. According to her there are more than 100 types of MOTT bacteria some of them are colonizers only that doesnt need to be treated. She said we are not even sure if the antibiotics which was prescribe to me rifampicin clarithromycin and ethambutol is correct since the type of MOTT was not specified. Just an advise for those who is diagnosed with MOTT always request for specie identification before taking medication. As of now my pulmonologist prescribed me Fluimicil 600 for my cough and still waiting of result of my sputum culture. Again thanks for your advise by the way you can call me imee.

REPLY
Nass | @nnassiri | Nov 8, 2016
In reply to @nnassiri "Dear Katherine, and all. My wife had been diagnosed few days ago with MAC. She had..." + (show)
@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

Jump to this post

Many thanks everyone. A pulmonologist had seen my wife and looked at the results. He said there is no need for medication as she is asymptomatic. He added that MAC comes and goes, and asked to repeat the sputum culture one more time. BTW, My wife is on Symbicort. God bless you all.
Nasser

REPLY
Katherine, Alumni Mentor | @katemn | Nov 9, 2016
In reply to @nnassiri "Dear Katherine, and all. My wife had been diagnosed few days ago with MAC. She had..." + (show)
@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

Jump to this post

Hello Nnassire, such good news! BUT I would suggest you request a copy of any/all sputum culture results. I ALWAYS get a copy .. I have them going back to 2007.

Nnassir and All, It is helpful .. if you look back a ways on our Forum you will see my post on the fact that Mycobacterium IS present in the lungs .. BUT is "smear negative" ie cannot be seen by the microscope .. "smear positive" ie it CAN be seen under the microscope which I understand is the most important. ("Colonies" ie One .. Two .. "Few ie more then 10" .. Many ie 20 to 25 colonies". )

That is why they does a series of cultures .. because the specimens end up coming from various parts of the lungs so by getting samplings in this manner they can put a "puzzle" together of just what is going on in the lungs.

I'm putting out this information while it is in my head! I saw my wonderful Dr. Aksamit at Mayo Clinic today .. and Blessings! I am again "Stable" .. since May 2014! Yes, Mycobacterium has always been present .. the reports have included : "No Growth after 60 Days" to "Few, "Many" .. but ALWAYS "Negative" .. so I am home free. Happy Days! Hugs to all! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 9, 2016

Hi Terri! SO glad you got that appointment at NJH! In terms of questions .. if I was you .. I'd just go back on the Forum pages .. read and write down anything that comes to mind that you think applies to your situation. That is what I did in preparation for my appt with Dr. Aksamit today .. just numbered my qustions .. leaving spaces for the answers. Now that I'm home .. I;m going to type up the answers while they are fresh in my mind. Personally I keep all these type things in Word documents .. my "memory" file .. since my memory is not that great! Happy for you .. This your GREAT opportunity for good answers .. prepare for it .. I know you'll do a great job! Hugs! Katherine

REPLY
8 replies
Katherine, Alumni Mentor | @katemn | Nov 9, 2016
In reply to @katemn "Hello @imeehaigt (do you have a first name .. seems so much more personal!) .. SO..." + (show)
@katemn

Hello @imeehaigt (do you have a first name .. seems so much more personal!) .. SO glad you found us! Hmmm .. your situation sound a bit complex .. I feel because of your braces. Based on my own and everyone else's on our Forum's experience .. that darn Mycobacterium is a sneaky little varmit who just loves to hide in strange places! Just don't have a clue if the braces are an issue or not .. leave that to the doctors!

I think if I was sitting in your shoes .. your having already gone through antibiotic treatment .. I would decide to do my "Due Diligence" and get a good second opinion from an Infectious Disease doctor who is REALLY up on MAC. You should be googling first: Infectious Disease Doctors in your area .. then calling and asking "How many MAC patients have you treated in the past 12 months?".

When you have scouted out that doctor .. FIRST .. request "Any and All" medical records from any/all doctors who have treated your lungs in the past .. go PICK them up yourself!! That makes sure the records don't get lost in the shuffle. THEN start asking the above questions from this new doctor to really figure out what is going on with your body. You and I are not doctors .. you need proper guidance to make an educated decision on what you want to do.

Before you contact doctors I would especially recommend an article I just recently happened upon  .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed.  It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation.  I have put the link below:
http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
BUT you are given just one body in this lifetime .. one set of lungs .. only YOU can take care of them .. no one else is going to care as much as you do. YOU have to take care of you! With what you have going on .. if it was me .. I'd pursue what I'm suggesting .. but that is only me. You are only 40 .. a long time to live in that body .. take good care of it! A good friend of mine chose to get braces in her mid 50s! If you need to remove your braces temporarily for your long term health .. that could be a choice you make?

Truthfully .. I wouldn't think day/night shifts would make a difference .. UNLESS it affects your sleeping and you are not getting proper rest. Sleep is VITAL for good health. In terms of mucus .. I am not recommending it but I read:
For Bronchitis "This Mucinex medicine really helped me out with a bronchitis attack. I have been suffering with acute bronchitis for about 3 weeks now, after taking all of the medication that my doctor prescribed I still have no relief. After reading reviews I decided to give Mucinex (liquid) a try, to my surprise it really helps to bring up all of that sticky mucus that was stuck in my lungs. Although I'm not fully well yet, I can see better days ahead!"

I use what is kind of a SUPER Mucinex to liquefy the mucus that I got in Vienna from a doctor. Unavailable in the USA .. but I get it whenever I travel .. it really helps me cough up the sputum.. Remember that collected sputum is a breeding ground for MAC .. we want to get it up as much as we can .. I call the coughing my "lung hygiene" .. I know it is embarrassing .. but it really is a necessary function for our healthy lungs!

Hope you find some of this helpful .. sending you a hug in this tough decision time! Keep coming back .. your will find everyone very kind and supportive of your journey! Katherine

Jump to this post

Hello imee .. it sounds like you are right on the ball! You are SO correct that the culture must FIRST be identifies so they can determine just what antibiotic is the best one for that particular mycobacterium. I know this is a wait situation .. but now you have your ducks in a row and moving in the correct direction! So glad for you! Keep us posted .. we all walk this journey together .. a good place to be! Hugs to you! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Nov 9, 2016

Dear All, sad news .. at least to me! But I did have to share it with you! As you all know .. I've tried to do just any and all things I could think of to stay "stable" .. so I did put in the shower head and sink water filtration system I mentioned. OK WELL .. guess what! Today I was at "Mecca" .. saw Dr. Aksamit .. doing my "Due Diligence" .. and wanting to always do my best here on the Forum .. so I took all the info I had supplied to you on the two sets of equipment I had installed.

Ok .. answers from the Guru:
1. NO .. on the sink water filtrations system. WHY? Didn't even cross my mind .. but that man is so smart he picked up on it in a second .. BECAUSE AFTER the water leaves that wonderful water filtration system .. it has to flow through the faucet! WAULA .. biofilm will collect on the inside of the faucet creating a breeding place for mycobacterium!! Doggone it!! I tried so hard! BUT I will say I am going to keep the sink water filtration system .. Why? Because at least now the water tastes better!

2. The disposable shower heads: ok to use .. BUT as he pointed out .. mycobacterium is ALL over our environment. We really have NO possible way to avoid it .. AND I was NOT to feel I had done something wrong If I get MAC back .. because mycobacterium is just plain all over. He is such a nice man .. mainly I think making sure I knew I was "not to blame" if I do get the MAC back .. because it really is a sneaky little bugger! We really can just do our very best to live our lives as healthy as possible .. exercise .. eat well .. be serene .. do our best to keep our bodies in the best possible shape .. and then let the chips fall where they may. NOT drive ourselves nuts trying to cover every base .. maybe the way I've been trying to do?? Nope .. serenity is where it's at folks .. Hugs to all! Katherine

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