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.

mari | @mari | Mar 16, 2017
In reply to @katemn "@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial..." + (show)
@katemn

@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial Virus (RSV) in adults! How on earth are we supposed to "diagnose" ourselves between Respiratory Syncytial Virus (RSV) and a more serious virus or whatever?! I would think you did the wise thing is seeking medical care with your other health issues .. better safe than sorry I would feel for myself! Thanks for explaining! Hugs! Katherine

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When my Mom was in Banner Del Webb hospital in Sun City West, AZ almost every person that attended to her, pulled her hair back, I reported Many times, Admin would not bother w it. Then I thought i would report to her Dr. and he touched his forehead 4 a long time - I thought I give up.Also, have u seen medicals drop gloves - pick them up off the floor and just keep going? I have.<br>Mari<br><br>

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Katherine, Alumni Mentor | @katemn | Mar 16, 2017
In reply to @katemn "@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial..." + (show)
@katemn

@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial Virus (RSV) in adults! How on earth are we supposed to "diagnose" ourselves between Respiratory Syncytial Virus (RSV) and a more serious virus or whatever?! I would think you did the wise thing is seeking medical care with your other health issues .. better safe than sorry I would feel for myself! Thanks for explaining! Hugs! Katherine

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@mari, Mari, I can only repeat as Boomer says below .. we CANNOT be shy about advocating for ourselves OR our family members. My husband has been in the hospital many times. Frankly I become a mother bear. If something is not done right .. I go RIGHT TO the Head Nurse and in a FAIRYLY nice way DEMAND things be done properly for my husband. YES, you get more with "Honey than Vinegar" .. BUT ALSO "The squeaky wheel gets the Oil!" .. and in today's hospital with the overworked staff .. I have left it up to my husband to be his usual charming and adorable self to get great service .. "good cop/bad cop" routine. It usually works .. he charms the nurses .. I get things done with the Head Nurse! I will NOT put up with my husband NOT getting good care in the hospital .. it is especially important that family members have an ADVOCATE in the hospital in my opinion! Mari, this is just my opinion. Katherine

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Katherine, Alumni Mentor | @katemn | Mar 16, 2017

Kay Strand @kaystrand Sent on Thu, Mar 16, 2017 at 1:00 pm
Seems like so many of us would have thyroid issues at our age. I'm seeing my doc next week and will get an Endocrinologist recommended. Thanks again Kate!
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Kay Strand @kaystrand hope you do not mind but I am going to answer this on the Main Forum pages because I think my answer should be there.

Kay, PLEASE .. do NOT wait for a recommendation next week!! Do your OWN due diligence and follow the "How to on our past pages to find a doctor"! Waiting around for a "recommendation" is EXACTLY how my husband ended up with a COLON CANCER specialist for his BLOOD CANCER instead of a CLL SPECIALIST!! Too often doctors recommend their "buddies" .. or someone they went to school with .. or someone in their country club! This is just my opinion .. but after that experience I ALWAYS find my own doctors now. Here from my File Cabinet .. hope it helps .. do what you feel is right .. just my opinion! Hugs! Katherine

DOCTOR-FINDING GOOD Endocrinologis
If was sitting in your shoes here is what I would do.
1. Google: Endocrinologist in your area
2. Google each doctor .. see where they went to school .. my opinion .. the better school they went to .. the smarter they probably are
3. look for doctors photos (can be years old) that appear young enough to have newer knowledge but old enough to have good experience
4. look at their bios .. look for one that show a specialty of Hypothyroidism .. did research in that area in college .. any mention of
5. when you find a doctor specializes in Hypothyroidism .. GET an appointment .. THAT one will know how to treat you!

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irene5 Irene Estes | @irene5 | Mar 16, 2017
In reply to @katemn "@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial..." + (show)
@katemn

@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial Virus (RSV) in adults! How on earth are we supposed to "diagnose" ourselves between Respiratory Syncytial Virus (RSV) and a more serious virus or whatever?! I would think you did the wise thing is seeking medical care with your other health issues .. better safe than sorry I would feel for myself! Thanks for explaining! Hugs! Katherine

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And a great opinion to have!

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Katherine, Alumni Mentor | @katemn | Mar 17, 2017

Hello All, brought to my attention something that I thought was REALLY interesting since our group has several times mentioned hoping that the day comes when various forms of research results in better treatment for our lung diseases .. so I thought I'd mention the below. It just confirms my belief the importance of having a GOOD working relationionship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power! Hugs! Katherine

Read: "The Washington Post reports that an article in the New England Journal of Medicine suggests patients are being fooled by clinical trials that wind up on the NIH's internet data base without assurance that the trials are safe and promising."
https://www.washingtonpost.com/news/to-your-health/wp/2017/03/15/three-women-blinded-by-unapproved-stem-cell-treatment-at-south-florida-clinic/?utm_term=.478d55d46029

and ""Unapproved clinical trials are able to list (their) study on a comprehensive database of clinical trials called ClinicalTrials.gov (https://clinicaltrials.gov/), which is run by the National Institutes of Health (NIH). At least one of the patients — and maybe more — believed that she was taking part in a government-sanctioned study," he said.
"Paul Knoepfler, a stem-cell scientist, said that allowing the clinics to list their trials on ClinicalTrials.gov is 'almost like a form of advertising for products that don't have FDA approval. That's really problematic.' "

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2 replies
mari | @mari | Mar 17, 2017
In reply to @katemn "Hello All, brought to my attention something that I thought was REALLY interesting since our group..." + (show)
@katemn

Hello All, brought to my attention something that I thought was REALLY interesting since our group has several times mentioned hoping that the day comes when various forms of research results in better treatment for our lung diseases .. so I thought I'd mention the below. It just confirms my belief the importance of having a GOOD working relationionship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power! Hugs! Katherine

Read: "The Washington Post reports that an article in the New England Journal of Medicine suggests patients are being fooled by clinical trials that wind up on the NIH's internet data base without assurance that the trials are safe and promising."
https://www.washingtonpost.com/news/to-your-health/wp/2017/03/15/three-women-blinded-by-unapproved-stem-cell-treatment-at-south-florida-clinic/?utm_term=.478d55d46029

and ""Unapproved clinical trials are able to list (their) study on a comprehensive database of clinical trials called ClinicalTrials.gov (https://clinicaltrials.gov/), which is run by the National Institutes of Health (NIH). At least one of the patients — and maybe more — believed that she was taking part in a government-sanctioned study," he said.
"Paul Knoepfler, a stem-cell scientist, said that allowing the clinics to list their trials on ClinicalTrials.gov is 'almost like a form of advertising for products that don't have FDA approval. That's really problematic.' "

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UNABLE to open link. How do we find out which trials r legit?

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Katherine, Alumni Mentor | @katemn | Mar 17, 2017

@mari .. Mari, I was able to open the links by just clicking on the "blue" links on my post .. try again? Also on your email .. did you just hit at the bottom "View and Reply" to get to my post?

In terms of the trials .. I personally have ZERO experience with trials .. perhaps other members can jump in .. BUT I would repeat:
It just confirms my belief the importance of having a GOOD working relationship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power! Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Mar 18, 2017

Dear All, I found the below article interesting .. it may be elementary to some .. but enlightening to some so am going to mention it! Hugs to all! Katherine

A BEGINNERS GUIDE TO THE LUNGS AND HOW THEY WORK

https://pulmonaryfibrosisnews.com/2017/03/08/a-beginners-guide-to-the-lungs-how-they-work/
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1 reply
mari | @mari | Mar 19, 2017
In reply to @katemn "Dear All, I found the below article interesting .. it may be elementary to some ....." + (show)
@katemn

Dear All, I found the below article interesting .. it may be elementary to some .. but enlightening to some so am going to mention it! Hugs to all! Katherine

A BEGINNERS GUIDE TO THE LUNGS AND HOW THEY WORK

https://pulmonaryfibrosisnews.com/2017/03/08/a-beginners-guide-to-the-lungs-how-they-work/

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Katherine   Katherine, Volunteer Mentor @katemn I will have breast reconstruction surgery 3/20/17. what group should I be in ?<br>Mari<br><br>

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Katherine, Alumni Mentor | @katemn | Mar 19, 2017

@mari, Mari, the Main Connect Forum for Breast Cancer is: https://connect.mayoclinic.org/group/breast-cancer/

From Colleen: In the meantime, here is some information about the different types of reconstruction options http://www.mayoclinic.org/tests-procedures/breast-reconstruction/basics/definition/prc-20020499

I am adding @teege1, @user_3c9038a,@luladavis and @smness .. hoping they will jump in and give you some help/hints/support!

If I was you .. I would read through the various discussion threads to see if you find the help/hints/support you are looking for. IF you DO NO .. what I would do .. at the TOP of https://connect.mayoclinic.org/group/breast-cancer/ .. says "START A DISCUSSION".

Why don't you start a discussion with something like: I am facing breast reconstruction soon and have LOTS of questions! Anyone out there who might be able to help me? Mari

Hope this helps you Mari .. I think you will find help. If NOT you get right back here and I'll find it for you! Hugs to you and LOTS of positive energy! Katherine

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