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.

alleycatkate | @alleycatkate | Jul 7, 2018

@boomerexpert Your writing is wonderful...each and every thought, so appropriate, timely and should be considered by all. The only thing I would like to mention is that the certification of 'humanely certified" or 'american humane certified' is the lowest and worst certification allowing for abuse to the animals. The best is "Animal Welfare Approved" then 2nd best, "Certified Humane". Most all other certs are useless. And of course my usual suggestion... maybe leave these animals in the barnyard and off of plates. 🙂 Thanks for sharing your beautiful blog with me. I stand with you on all counts. So guess we probably need to go back to discussing MAC... lol.

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1 reply
heathert | @heathert | Jul 7, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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With you all the way, been a vege since I was 18, loooooooove animals, so beautiful and hate the cruelty. I Support animal charities , they are all fantastic.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 8, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@tdrell Yes, I have seen Food Inc. Abysmal documentary.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 8, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@tdrell I totally get you on this.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 8, 2018
In reply to @jkiemen "@america You came to the right place. We all understand about the disease and all have..." + (show)
@jkiemen

@america You came to the right place. We all understand about the disease and all have similar but yet different stories and severity of illness. It impacts your physical and emotional health. Some of us are on the Medications, some tolerate and others do not. Tell us more about yourself. How did you discover it, how advanced was it, what meds where you on?. What are you doing for treatment now?

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@unicorn Hi Christa, and everyone. I read the cylibus for the upcoming 3rd Bronchiectasis and Mac (NTM) World Conference in DC. One big topic on the list is Nitrous Oxide treatment and the new delivery system for it. How exciting is that?? It is a nine hr drive from me, but I might try to attend. Have to see how my energy is doing.

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tdrell | @tdrell | Jul 9, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@windwalker ..I really had a good laugh this evening...want to share...talking on phone to chum in California...she has sooo much on plate...2nd husband has dementia and is going downhill fast...his family scattered all over country...she never had kids...
we are both in 70’s and we have talked in past re our rotting joints and lungs ...so midway thru talking I asked “let’s talk about how you are doing” her reply “my earlobes are doing just fine thank you”
We both had such a therapeutic chuckle from that comment...I think I will now use it also. Tdrell

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america | @america | Jul 9, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

Hey boomerexpert ! Thanks you I’ll get on that.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 9, 2018
In reply to @alleycatkate "@boomerexpert Your writing is wonderful...each and every thought, so appropriate, timely and should be considered by..." + (show)
@alleycatkate

@boomerexpert Your writing is wonderful...each and every thought, so appropriate, timely and should be considered by all. The only thing I would like to mention is that the certification of 'humanely certified" or 'american humane certified' is the lowest and worst certification allowing for abuse to the animals. The best is "Animal Welfare Approved" then 2nd best, "Certified Humane". Most all other certs are useless. And of course my usual suggestion... maybe leave these animals in the barnyard and off of plates. 🙂 Thanks for sharing your beautiful blog with me. I stand with you on all counts. So guess we probably need to go back to discussing MAC... lol.

Jump to this post

@alleycatkate, @nick52, @tdrell, and @heathert & me….Hey girls, I just remembered that 'off-topic' conversations (cbd oil, animal rights, my TMJ) need to be posted in the 'We Are More Than Our Disease' thread. You can find it on the list on the Discussion board. It is easy to get off topic because we have become friends here. We must think of the new-comers who sign on, they are seeking info and support for mac and bronchiectasis. In the future, please go to this discussion site for 'off-topic' posts. Thank you!
hht://connect.mayoclinic.org/discussion/we-are-so-much-more-than-our-disease/

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Jo Ann K | @jkiemen | Jul 9, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@boomerexpert I have been trying Ripple It is a pea based milk and not too bad. I can't be found everywhere. I still eat some Yogurt every day for the probiotics. I also take the 25million Probiotic Cap. Maybe I should try stopping the yogurt. (on the big 3)

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boomerexpert | @boomerexpert | Jul 9, 2018

I agree that the animal rights discussion does not belong here...why I mentioned that earlier...@alleycatkate I have a suggestion for you via private message

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