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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 19, 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

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@contentandwell I understand, after 3 weeks it must have gotten lost in the shuffle. Health problems can be frustrating enough, having a responsive doctor helps mitigate the frustration just a little. What sort of efforts have you made to find a new PCP? Have you tried any local clinics or asked friends for referrals? Teresa

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tdrell | @tdrell | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

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Katherine...the federal gov gives $ to every county in USA to provide a Dept of Aging and disability....ours gives a monthly " welcome to Medicare" workshop...it is awesome. Folks should start learning about Medicare and options at least a year before turning 65...Medicare D is its own headache but at least you can review it and change it every year.
If a person has chronic conditions...the WPS workshop leader said " Medicare advantage programs ( part C) AKA HMOs are not for you"tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

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@tdrell, Terry, OR have an incredible "Independent Insurance Agent" that we have known for 30 years (a woman!!) who knows absolutely everything about insurance and it's options .. and explains everything to a T! Blessed are we! Thank you for that information for all those NOT so well blessed! Hugs! Katherine

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 19, 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

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@maryjo2sell hello
MaryJo! I just looked up that suppliment, NAC. Sounds like good stuff. Will have
to try it.  

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 19, 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

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@katemn Wow!
that sounds like an amazing drug. What country have you purchased it
from?
 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 19, 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

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  @boomerexpert 
Hi there! I have found that GOOD accupuncturists can work miracles. Haven&apos;t
found a very good one locally yet. I&apos;d like to try that medicine too.
 

REPLY
mac47 | @mac47 | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

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Katherine, is your miracle agent able to help people outside your area? I live in a suburb of Chicago & could use some help before the Fall "change" option rolls around!
Lynne

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 19, 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 I
hear you, MaryJo. I don&apos;t know how my spouse tolerated my years of hacking.
I mean SERIOUS hacking like coughing up a lung! I have not coughed in many
months now since new treatment. What a blessed releief.
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

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@mac47 Hi Lynn! Last time I saw you at the convention, you were coughing
non-stop almost. How are you doing now? Terri in Bluffton
 

REPLY
mac47 | @mac47 | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

Jump to this post

Sorry, wrong Lynne. I wasn't at the conference(just watched u tube version).

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