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 | Jun 14, 2017
In reply to @lindam272 "This came across my email this morning from Cambridge Mask Co. Right now they are raising..." + (show)
@lindam272

This came across my email this morning from Cambridge Mask Co. Right now they are raising money for this new concept, but I believe you can also sign up to receive a mask with the smart valve once they have them in production. Just an FYI for anyone who may be interested. Linda

Jump to this post

@lindam272, Linda, just a heads up .. UNLESS the new one is the SAME price as the old model .. I was perfectly happy with older model .. would not pay a dime for the updated model .. just my opinion. Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 14, 2017
In reply to @lindam272 "Hi, everyone, How often do you get your hearing checked if you are on Azythromiacin? Linda" + (show)
@lindam272

Hi, everyone, How often do you get your hearing checked if you are on Azythromiacin? Linda

Jump to this post

@lindam272, Linda, posting the whole thing since I had to cut/paste in case anyone else is interested! Hugs! Katherine

From my File Cabinet:

TESTING-baseline and periodic 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:

BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION

NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.

For between vision checks: APP- COLOR BLINDNESS- FOR SMARTPHONES .. apps of color blindness, CBT, visual test, and visual acuity .. just go to the App Store on your phone and search each one- Are You Color Blind? by James Kwan)

REPLY
jentaylor | @jentaylor | Jun 14, 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 Becky, I have really good Highmark Blue Cross/ Blue Shield through Penn State & they still denied it (neb. Toby) for me even after my doctor challenged it & had a peer to peer review (I think that's what they called it??), & based on the grounds that I don't have a CF diagnosis. The doctors office then gave me a 2 week supply that they had from a previous patient who didn't use it. I don't think it was long enough though. Others on Connect are getting it though, so I guess you just have to keep on fighting! Good luck! ~Jen

REPLY
jentaylor | @jentaylor | Jun 14, 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, Becky, how in the world are they justifying not paying for your pain meds!?!?!?! I'm a huge advocate for adequate, proper pain management, without judgment & I find it absolutely appalling that the insurance companies can possibly make the decisions on whether to cover something the doctor has deemed necessary!!! Or further more that many physician are refusing to even continue prescribing pain meds under present, persistent scrutiny!!!!!! Ridiculous!!! I am so sorry to hear that...I know pain meds can be very pricey!!! I hope something gets worked out!!! Proper pain management is a basic right that everyone should be afforded! ~Jen

REPLY
Katherine, Alumni Mentor | @katemn | Jun 14, 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

@jentaylor, Jen and @chinasmom Becky .. COULD IT POSSIBLY BE my Tobramycin is being paid 100% because it was prescribed by a Mayo doctor .. AND being shipped out to me by the Mayo Pharmacy at Rochester MN?? That just doesn't seem possible .. BUT it ALSO seems weird that I am the ONLY one being paid for!! Hmmm. Hugs! Katherine

REPLY
jentaylor | @jentaylor | Jun 14, 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

@katemn, Katherine & @chinasmom, Becky, Yeah, I just don't quite understand! It doesn't seem to make any sense!!?!??~Jen

REPLY
jentaylor | @jentaylor | Jun 14, 2017
In reply to @lindam272 "Hi, everyone, How often do you get your hearing checked if you are on Azythromiacin? Linda" + (show)
@lindam272

Hi, everyone, How often do you get your hearing checked if you are on Azythromiacin? Linda

Jump to this post

Well, I just opened a piece of mail today & it's a bill for $27,000 that I owe to Mayo!!! I thought more was covered by my insurance, Highmark BC/BS & my secondary insurance is Medicare. By golly you think it would have been mostly covered!!! So now I ha e to do my "due diligence" & educate myself on just how much my insurance did cover & have it explained to me why their is a remaining $27,000 still needing paid!!! Ugh...insurance companies!!! No matter what, I will never for a moment feel regret or any ill thoughts about my decision to go to Mayo (Rochester)! It was quite an arduous trip for me but so worth it!!!!!! An amazing insituation!!!!! So wish I was closer!!!!! ~Jen

REPLY
chinasmom | @chinasmom | Jun 15, 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

@jentaylor, I thank you for letting me know that you advocate for proper pain management. Lots of people don't understand the other side of the opioid crisis. They just see the tv version and think heroin addiction and overdose. The cdc and surgeon general have sent out letters to insurance companies and doctors asking them to take a stand and be the leaders against the opioid crisis in any way they can. So the sheet metal worker's local 36 union sent me copies of the letters they received along with a denial letter saying they will no longer be paying for chronic non cancer opioid pain medicine, only 6 weeks after a surgery or end of life cancer. I have aexausted every other treatment from least invasive to surgery over 17 years. Many of those years spent in bed crying. My doctor put me on a Butrans patch I change it weekly and it allows me to get up and take care of myself. It makes life bearable. But people immediately assume I am an addict if Im taking an opioid. Its just not true and I hope they are able to get proper pain management when they need it. Im so appreciative of your kind words and understanding. I hope that huge bill from mayo is just a mistake. Take care!
Becky

REPLY
tdrell | @tdrell | Jun 15, 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

Katherine..,Could it be that even the insurance companies won't argue with Dr Akasient...sp? Or you are part of a research project funded by grant or drug company? Tdrell

REPLY
tdrell | @tdrell | Jun 15, 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

All...along time ago I knew a woman who had annual mammograms and for 5 years assumed she was fine. Then her Gyn doctor retired....she had to go to another clinic for new Dr. All records transferred...she got a call re 5 years of suspicious mammograms....follow thru showed she had breast cancer...inspire of the negligence, it was still early stages.tdrell

REPLY
View MoreView Less
Please sign in or register to post a reply.