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.

chinasmom | @chinasmom | Jun 17, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

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@contentandwell, Thanks for the information. If you don't have medicare D, who covers your prescriptions? Im in Missouri it was too dry all week some rain overnight and temps in the 90s. Too hot and harder to breath outside. So Im stay in except for spraying for ants and taking my pekeingese outside. I'm getting her bath ready, it takes about 3 hrs but its worth it when we are done. For some reason my lungs get a work out and always decide to clear themseves during the blow dry. Kind of a strange phenomenon huh? Take care and Buy for now.
Becky

REPLY
JK | @contentandwell | Jun 17, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

@chinasmom My last post made me curious about the differences since I had forgotten. Apparently Plan G is not as good as F, it has more deductibles. This is what I read "Medicare Supplement Insurance Plan F, "the most comprehensive plan offered". I told my husband when I signed up for F that it was a gift for him. Unfortunately I was right. I can't help but wonder what people without good coverage do. My son works for a small company and as is typical the coverage is pretty basic. My daughter is a free-lancer so she has some form of ACA. I have no idea what that covers. A few years back when she worked for a small company she had a TIA and was in the hospital overnight. She really got hit with bills. She managed to work something out with the hospital, paying over time I believe.
JK

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

Hi Becky, what about that thing they insert into your back that sends out
electonic pulses? I have a friend with that implant and she swears by it. I am
so sorry that you have had to endure pain for so long. I can&apos;t even imagine
living like that. Big Hug, Terri M.
 
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

You can also have your dr fight for you too. He can send a letter
explaining why this is the only thing that will work for you.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

Medicare pays 80% of my toby through Walgreen&apos;s. I got a scholarship for
the rest. Maybe Mayo Pharmacy is not an approved pharmacy through Medicare or
whoever you have insurance through.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

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@katemnGood
to know. Yet one more reason to go to our big fancy institutions!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2017
In reply to @kaystrand "Kate are you saying the Mayo did not contact you about the 3 new bacteria? YOU..." + (show)
@kaystrand

Kate are you saying the Mayo did not contact you about the 3 new bacteria? YOU found them on the report not them? Wow that's a little scary if it's true. Please explain. Thanks, Kay

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@katemn 
Hi Katherine. Prayers for your daughter in law. Do hope hers was caught early. I
am having a mammogram next Tuesday at Mayo. I will ask for the 3-D since my
breast are dense also. Will have my 6 month LFT also.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2017
In reply to @teresaml "Many thanks Colleen. My side effects are the usual.... nausea and diarrhea, plus feeling very sleepy..." + (show)
@teresaml

Many thanks Colleen.
My side effects are the usual.... nausea and diarrhea, plus feeling very sleepy about an hour after taking them.
My doctor has me going for blood test once a month. From reading these pages I will also discuss with him hearing and sight tests.
I was lucky enough to be sent to an eye specialist when they were trying to diagnose me so we have that base line to start from.

I had a wonderful consultation with a nutritionist that comes to my work place, Rebecca Dietziel from New York.
She gave me advice on probiotic foods, foods that have some antibiotic qualities and others that will help boost my own immune system.
I figure that if I follow some of these guidelines it's my own way of "fighting back" and it gives me a feeling of being in control of my infection!

Once again many thanks to everyone for your thoughts on this page.....

Oh, by the way I bought a Cambridge mask because of advice on the page..... USA would not ship to Canada so I got it from the UK.
It was here within 4 days!

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@tdrell Thank you for that info. I will bump mine up too.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2017
In reply to @kaystrand "Kate are you saying the Mayo did not contact you about the 3 new bacteria? YOU..." + (show)
@kaystrand

Kate are you saying the Mayo did not contact you about the 3 new bacteria? YOU found them on the report not them? Wow that's a little scary if it's true. Please explain. Thanks, Kay

Jump to this post

@tdrell Wow! That is scary as hell! Medicare will only pay for
mammoograms every two yrs. I had one last yr. as well a few others over the yrs
here locally. I am getting another one done this Tues at Mayo. I just don&apos;t
trust the locals here because of the other poor drs in the area. For example, I
saw my local cardiologist for my annual check-up so that I could get my heart
meds refilled. He just asked me how I was feeling. He Never had me up on the
exam table or listened to my heart!!!!
 

REPLY
irene5 Irene Estes | @irene5 | Jun 17, 2017
In reply to @kaystrand "Kate are you saying the Mayo did not contact you about the 3 new bacteria? YOU..." + (show)
@kaystrand

Kate are you saying the Mayo did not contact you about the 3 new bacteria? YOU found them on the report not them? Wow that's a little scary if it's true. Please explain. Thanks, Kay

Jump to this post

I have Medicare (A and B) and have a yearly mammo at no charge, and it is a 3D one. Last year they found a cyst, so I had to go back for more films. I never paid a dime.

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