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 18, 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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Colleen, thank you SO much for this information .. I am sure Members will find it helpful! I am adding it to my File Cabinet! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 18, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@maryjo2sell, Mary Jo .. this IS MAC AND BRONCHIECTASIS .. that is why it is named that way .. BECAUSE the two go so DARN hand in hand! I can ONLY speak for myself .. BUT I was BLESSED through my careful research and "due diligence" to find a Homeopathic Practitioner who is ALSO a practicing Pharmacist (for 19 years!). Her story was that in the last year of pharmacy school they learned about Homeopathy .. she was intrigued .. BUT had student loans to pay off. WHEN she could afford to .. she then went for Homeopathy schooling. I initially went to her for migraine. In time I was about cut in half the 4x a day preventive prescriptions PLUS now rarely have migraines. When I was diagnosed with all these lung issues .. she now knows me so well she is able to prescribe what are called "remedies" .. no prescriptions that help me immensely.

Mary Jo, you do NOT want ZERO sputum production is my understanding .. you WANT to get up any/all bacteria OUT of your lungs and the sputum lung clearance gets the bacteria out. I just wanted LESS sputum.

SO .. all I can say is BE CAREFUL who you choose .. make SURE they are certified .. But try to find a Homeopathic Practitioner? My Homeopathic Practitioner is! http://www.homeopathicdirectory.com/ . I can only say I have been greatly helped with my lung issues .. PLUS general health by Homeopathy!

Interesting article: http://www.huffingtonpost.com/dana-ullman/homeopathic-medicine-euro_b_402490.html United Kingdom England’s Royal Family has been homeopathy’s strongest advocates, thereby confirming that this system of natural medicine is not some “new age” therapy. There are five homeopathic hospitals working within the National Health Service, some of them with a two-year waiting list for non-emergency visits to a homeopath.

According to a House of Lords report (2000), 17 percent of the British population use homeopathic medicines (11). The respect accorded homeopathy and homeopathic practice by British physicians is evidenced by a 1986 survey in the British Medical Journal that showed that 42 percent of physicians referred patients to homeopathic doctors (12)
.. Numerous surveys over the past 150 plus years have confirmed that people who seek homeopathic treatment tend to be considerably more educated than those who don’t (1). What is not as well known is the fact that homeopathic medicine is the leading “alternative” treatment used by physicians in Europe...and growing numbers of the citizenry.
And despite homeopathy’s impressive popularity in Europe .. In other words, approximately 100 million Europeans use homeopathic medicines (6). ..

REPLY
terryb1 | @128128terry11t | Jun 18, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

I was wondering what the homeopathic practitioner suggested that you take for migraines and lung issues. I needed a push to go to this type of professional and you just provided me with one. Thank you. I know that it is necessary to be evaluated in person but just wanted to know what was prescribed for you. Terry

REPLY
Katherine, Alumni Mentor | @katemn | Jun 18, 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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@windwalker, Terri .. that cardiologist isn't just scary .. he is terrifying!! Get going on finding the best of the least in your area! Do you have ANYTHING like this in your area: http://www.mnhealthscores.org/

Even sometimes Yelp.com or googling the doctor's name can help? I feel for you! BUT if you are getting to MAYO .. what a relief!! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 18, 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

@windwalker, Terri, she chose to have a mastectomy and will be rechecked .. a good cautionary tale. Zero breast cancer in her family .. ONE lump found initially by Mayo .. upon further checking found two more deeper. Only 50 years old but was hopefully caught early enough.. Scary time for our family. Hugs to all! Katherine

REPLY
jentaylor | @jentaylor | Jun 18, 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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@chinasmom, Becky, thanks for the helpful tips about working with your physician & insurance regarding billing! I still haven't watched the Micheal Moore movie...one of these days!

~Jen

REPLY
jentaylor | @jentaylor | Jun 18, 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 & @windwalker, Hi Becky & Terri M., I have a friend with chronic pain
In her back & she went through the surgery to implant a device to deliver electric impulses to help the pain & it did not work. She's back on aim meds. The same thing happened to my grandmother. I'm not trying to say that it does or does not actually work...I'm just passing along that I would do a lot of research on it...which I'm sure you would do! I was actually in the OR with the surgeon (I'm a previous OR nurse/RN) that implanted the device for my grandmother. It's not anything to take lightly...the surgery wasn't horrific but it is much more involved than I had previously realized...of course new technology brings about all sorts of new procedures these days!

~Jen 🙂

REPLY
Katherine, Alumni Mentor | @katemn | Jun 18, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@128128terry11t, Terry, working with a Homeopathic Practitioner is a bit like working not only with a doctor BUT also with a therapist .. because they work with the WHOLE person. For mine it involved an initial I think 2-3 hour "chat" .. discussing not only my full medical history but also my life in general. After her evaluation of me she ordered for me a "remedy" that I was to take. Over the years as my health needs have changed .. the remedy has changed. She now knows me so well that I only see her annually and we work primarily by email or phone. It is a very personal approach .. but trust me .. she is the first one I contact when things get tough! By the way .. I ALWAYS list my Homeopathic Remedy with my meds on my Medical List. PLUS when I discussed this with Dr. Aksamit .. I could CARE LESS about Western Medicine scepticism! As I told him "I may not understand just how Homeopathic Medicine works .. BUT I also do not understand how when I turn on a light switch .. the light turns on .. Homeopathy .. electricity? I really don't care .. if they work .. I don't need to understand them! If my migraine prescription use is now down 50% .. that is all the proof I need!" Hope this helps you! Hugs! Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 18, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@katemn You
go girl!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 18, 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, when it comes to medical treatment, everyone reacts differently. My
friend had her implant for several years and it worked for her. The device
finally gave out and she had a new one put in two weeks ago. It is still
working for her. She has been off of the oxycontin for years now. Thank
God.
 

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