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.

Katherine, Alumni Mentor | @katemn | Mar 28, 2017
In reply to @barbjh "It has been some time since I have written on this forum but read most responses..." + (show)
@barbjh

It has been some time since I have written on this forum but read most responses every day. Tomorrow I go back to the Mayo for a follow up visit. Dr Aksamit has decided not to treat my MAC in the past but to just watch it. I will be doing tests tomorrow and then seeing someone in pulmonary who works under Dr Aksamit. I am a little nervous about this visit. Wish I was feeling better but that is not the case. But I have gained weight which was a concern after losing 10 pounds before. Another thing is I usually go alone so it can be overwhelming. At least I live close by, 1 1/2 hours away. I will let you know how it goes, just wanted to reach out to all of you wonderful people that can relate to the struggle. Barb

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@patw, Pat be sure to let us know how your visit goes .. AND how your experience is at that hospital .. that would be good information for our Forum pages! Good Luck! Hugs! Katherine

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tdrell | @tdrell | Mar 29, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

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Katherine.....glad hubby doing well....now BOTH of you take care and get rest.Terrid

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lindam272 | @lindam272 | Mar 29, 2017
In reply to @cbest "Just got told I probably have MAC. I have been a respiratory therapist for 45 years..." + (show)
@cbest

Just got told I probably have MAC. I have been a respiratory therapist for 45 years and this is the first I have encountered this disease. So yes I am scared to death while I wait to see an Infectious disease dr. Would never have known I had anything until an episode of coughing up blood as I was working just before Thansksgiving. But it may have been a life saver since they did a CT. I have been treated from asthma and bronchitis almost cont. for a year or more now. My airways were so irritated and I just never seemed to get better or over the cough. No one looked for anything else. Any information and support will be appreciated.

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Katherine, Glad your hubby is home from the hospital! Praying for you both! Linda

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Katherine, Alumni Mentor | @katemn | Mar 29, 2017

@turbo .. do you have a first name .. more personal. What is the latest? Have you seen the doctor? Personally if I was sitting in your shoes I would read the following from my Filing Cabinet (since you have been in the medical field .. you will "get it")

1. I would want to KNOW which antibiotics would work BEFORE going on them!

IMPORTANT! https://labtestsonline.org/understanding/analytes/susceptibility/tab/test/
Make sure your Pulmonologist is doing a 'susceptibility panel' IN ADVANCE of going on that particular antibiotic to tell EXACTLY what your MAC will respond to and WHICH one of the few drugs that will work on that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.
Susceptibility Testing for Mycobacteria
http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805
http://cid.oxfordjournals.org/content/31/5/1209.full
http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

2. Read the back pages of this Forum to educate yourself on this shared MAC disease that we all have. KNOWLEDGE IS POWER! You will learn SO much more than even many of the doctors know about our disease. There you will learn .. you do NOT want just a Pulmonologist .. you want an Infectious Disease doctor that you ask: How many MAC patients have you treated in the PAST 12 MONTHS? .. AND you don't stop researching until you find one who has treated MANY so they know what the heck they are talking about! As you are reading .. feel free to come back and ask any questions you may have about what you are reading. Also read the top of this page re: making notes as you read! Sending you a hug! Katherine

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Katherine, Alumni Mentor | @katemn | Mar 29, 2017
In reply to @katemn "@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us..." + (show)
@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you're still alive! Hugs! Katherine

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@jentaylor, Hi Jen, just wondering how you are doing? Check in and let us know how you are? Sending you a hug! Katherine

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Katherine, Alumni Mentor | @katemn | Mar 29, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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@gggolfs, GG , wondering how you're doing? Can you check in and just let us know how you are? Hugs to you! Katherine

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Katherine, Alumni Mentor | @katemn | Mar 29, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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@heathert .. Heather I wore the below one for a 5 hour then a 11 hour flight! Really pretty comfy and cuter than the previous ones I have had. Hugs! Katherine

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TRAVEL-MASK and Air Supply Mini-Mate Personal Ionic Air Purifier--Black I was traveling to a VERY air polluted area .. I did a LOT of research and found there was a BETTER mask than the 3M N95 mask .. PLUS could looked kinda cute! I found it decent to breath with. I now will carry it as needed. https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab
Hope you find this helpful! Katherine ALSO use: Air Supply Mini-Mate Personal Ionic Air Purifier--Black https://smile.amazon.com/gp/product/B000B6CMZ4/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

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turbo | @turbo | Mar 29, 2017
In reply to @turbo "I was just diagnosed with Mac after spending a week in the hospital with flu b..." + (show)
@turbo

I was just diagnosed with Mac after spending a week in the hospital with flu b and had a bad cough went to see pulmonologist and put me on inhalers and neubulizer breathing treatments at home.Sent out sputum to check for TB and told me I have Mac! Scared not coughing anymore??? Wants to start antibiotics on Monday??

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Yes bad cough non productive doing breathing treatments inhalers then cough syrup with codiene and it stopped and I got rest . Then I got one sputum up and sent it out for tb and 2 weeks later told I have MAC!!

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boomerexpert | @boomerexpert | Mar 29, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

Yay!!! Hugs to hubby

REPLY
heathert | @heathert | Mar 29, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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thank you so much @katemn!

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