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.

maryjo2sell | @maryjo2sell | Feb 26, 2017

Just to join the discussion i think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM.(non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. I hope everyone is having a wonderful, fantastic weekend. I live in Florida and our weather today is awesome! Good wishes to all, Mary Jo

REPLY
1 reply
tessie | @tessie | Feb 26, 2017
In reply to @ginak "Hi Katherine, thanks for your input. I don't understand though if the water is purified how..." + (show)
@ginak

Hi Katherine, thanks for your input. I don't understand though if the water is purified how the bacteria would get in it, but, nonetheless, I will not be taking the chance on the water cooler. I guess I'll just stick to the bottled water. Thanks, Gina

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As you said, I will inquire further thanks Katherine.Tessie

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Katherine, Alumni Mentor | @katemn | Feb 26, 2017
In reply to @maryjo2sell "Just to join the discussion i think sometimes we can get carried away with prevention and..." + (show)
@maryjo2sell

Just to join the discussion i think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM.(non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. I hope everyone is having a wonderful, fantastic weekend. I live in Florida and our weather today is awesome! Good wishes to all, Mary Jo

Jump to this post

@maryjo2sell, Mary Jo I APPLAUD you!! Amen to that!! You have brought true sanity to this conversation! Sometimes I absolutely think it is true that we lose sight of the big picture .. that we DO live in this big wonderful world of ours! Just going to a movie and having a drink with THEIR ice cubes .. going out for dinner .. drinking THEIR water and THEIR ice cubes .. you made me think of that! THANK YOU for jumping in with your sanity! In fact I am absolutely going to add your thoughts when I note "filtration" for my File Cabinet.. a note of sanity! Hugs to you! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Feb 26, 2017
In reply to @katemn "Posted by @pamelasc1, 22 minutes ago Thank you Katherine and Steve for the information as to..." + (show)
@katemn

Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up - lovely subject! - I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer ... which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful "flutter" I had to turn the "+" sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max "+" setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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@chinasmom, Becky, you are dear and it does my heart good to read this .. but I was wrong to allow my fatigue to misdirect a private email to what I consider my sacred Mayo Connect space .. and I do apologize again for that. But thank you for your very kind words .. this Mayo Connect is a sacred space for me .. and I truly do try to do my very best for all of you .. and trust me I get back SO much more than I ever give to you. With big hugs and tears in my eyes .. to everyone! Katherine

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Jennifer | @megan123 | Feb 26, 2017

I think u are right. However everyone is at a different stage of a type of grief, losing health to chronic illness. It is important to also keep that perspective in mind as well as a positive attitude in our life long journey. u are truly amazing people.....

REPLY
4 replies
irene5 Irene Estes | @irene5 | Feb 26, 2017
In reply to @megan123 "I think u are right. However everyone is at a different stage of a type of..." + (show)
@megan123

I think u are right. However everyone is at a different stage of a type of grief, losing health to chronic illness. It is important to also keep that perspective in mind as well as a positive attitude in our life long journey. u are truly amazing people.....

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Oh my goodness megan123! Where did you come from? That's what it is! I never looked at it like that before, but you are so right. MAC has taken so much from so many people who were once vibrant and energetic and so full of life. That must be why they say "before MAC" and "after MAC." Yes,it is just like stages of grief. Only thank the good God, it is said we may die with MAC but not from MAC! Thank you for your insight! And yes, keeping positive is key. My mom always said, "It's all in the attitude!" Irene

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Katherine, Alumni Mentor | @katemn | Feb 27, 2017

Hello All, can't for the life of me remember if anyone has posted this yet so forgive me if this is repeated .. but it is relevant so will post this .. hope it helps someone! Hugs! Katherine

Aerobika Device Shows Promise for Non-CF Bronchiectasis Patients
https://bronchiectasisnewstoday.com/2017/01/17/aerobika-device-shows-promise-non-cystic-fibrosis-cf-bronchiectasis-patients/?utm_source=BRO+E-mail+List&utm_campaign=f28af5dd14-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-f28af5dd14-72040541

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Katherine, Alumni Mentor | @katemn | Feb 27, 2017

Hello All, I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:

You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.

For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

REPLY
4 replies
decosmo | @decosmo | Feb 27, 2017
In reply to @katemn "Hello All, I read a while ago about this and have been practicing nightly to try..." + (show)
@katemn

Hello All, I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:

You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.

For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

Jump to this post

http://www.doctoroz.com/blog/mao-shing-ni-lac-dom-phd/3-pressure-points-heal-yourself

REPLY
irene5 Irene Estes | @irene5 | Feb 27, 2017
In reply to @katemn "Hello All, I read a while ago about this and have been practicing nightly to try..." + (show)
@katemn

Hello All, I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:

You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.

For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

Jump to this post

Using it right now! Thanks. Irene

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