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(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.

Profile picture for tdrell
tdrell | @tdrell | Jul 13, 2017
In reply to @virtuous69 "Sorry folks, I'm referring to the MAC, not TB unless they are related?" + (show)
Profile picture for virtuous69 @virtuous69

Sorry folks, I'm referring to the MAC, not TB unless they are related?

Jump to this post

Windwalker....look how lives were soooo disrupted by the nasty TB organism....that had no cure.So many diseases so similar...no cures or prevention. A side comment...I read a book about Marie Curie ...she and hubby discovered the theory of radioactivity as well as 2 materials....radium and polonium..
She was frequently going to the Mountains for a rest....thinking it was TB.
She died in her mid 60s as a result of aplastic anemia caused by exposure to radiation...not TB.
Tdrell

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Profile picture for beatitnow
beatitnow | @beatitnow | Jul 14, 2017

Hi everyone. I have not written in a while. I have been in the process of moving for the last 6 weeks. I'm currently staying at my parent's house until we move into our house on Aug15! (And, yes, @katemn, we ended up buying a standing house instead of building...thank you for your advice.).

As a reminder, I have MAI and bronchiectasis, and I have been on the 3 meds for 4 months now. My parent's have a chlorinated pool in the back yard which is very nice. I have not swam in the pool yet because I wasn't quite sure if this brought more of a risk of getting further bacteria. I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their "file cabinet" about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!

Amy

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3 replies
Profile picture for JK
JK | @contentandwell | Jul 14, 2017

@beatitnow These questions posted by Amy are also of interest to me. For some reason I cannot find my way to Amy's post though. I am interested too if anyone knows anything about this. I use a chlorinated pool about 5 times a week for water exercise and I believe when we go away in October that the place where we are staying has a salt water pool.
___________________________________________________________________________________________

I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their "file cabinet" about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!
___________________________________________________________________________________________

Thanks, JK

REPLY
6 replies
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @contentandwell "@beatitnow These questions posted by Amy are also of interest to me. For some reason I..." + (show)
Profile picture for JK @contentandwell

@beatitnow These questions posted by Amy are also of interest to me. For some reason I cannot find my way to Amy's post though. I am interested too if anyone knows anything about this. I use a chlorinated pool about 5 times a week for water exercise and I believe when we go away in October that the place where we are staying has a salt water pool.
___________________________________________________________________________________________

I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their "file cabinet" about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!
___________________________________________________________________________________________

Thanks, JK

Jump to this post

@contentandwell When I was at the convention in DC, the experts there said that
chlorine actually concentrates MAC and that some species have become
resistant to it. (They even recommend cleaning your countertops with
vinegar instead chlorine because of the resistance). I am not saying that all
public pools are unsafe for us MAC people; I would def look at the water clarity
and smell. (not that that is a true indicator) I personally do not swim in pools
very often. If I am at a pool; I take a dip if I am very hot, I don&apos;t put
my head or face in or near the water. MAC organisms are found in the ocean too.
I would think salt treated pools are better. I plan to research this more. I
know that INDOOR pools and hot tubs should be avoided.
 

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @virtuous69 "Sorry folks, I'm referring to the MAC, not TB unless they are related?" + (show)
Profile picture for virtuous69 @virtuous69

Sorry folks, I'm referring to the MAC, not TB unless they are related?

Jump to this post

 @tdrell That
is interesting about Marie Curie.
 

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @katemn "@auntnanny .. Jan, Welcome! I am not quite sure what you are asking when you say..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

@auntnanny .. Jan, Welcome! I am not quite sure what you are asking when you say "Would like to join the group. Please tell me where to go to do this." Please clarify your request. Hugs! Katherine

Jump to this post

@auntnanny Welcome to our forum! We are here for
you.   - Terri M.
 

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
Profile picture for auntnanny @auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@katemn,
@auntnanny  GREAT ADVICE!
 

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
Profile picture for auntnanny @auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@auntnanny I am SO glad that you went and got a second opinion about your
reflux issue!
 

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
Profile picture for auntnanny @auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@auntnanny they say playing the harmonica is also a great way to exercise
the lungs.
 

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
Profile picture for auntnanny @auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

Jump to this post

@katemn Katherine,
I love that "How do you eat an elephant?&apos; phrase! Will have to store that one in
my memory bank. I am sure it will come in handy one day.
 

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