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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 13, 2017
In reply to @katemn "@jula73, Jula .. I am assuming that is your first name .. PLEASE correct me if..." + (show)
@katemn

@jula73, Jula .. I am assuming that is your first name .. PLEASE correct me if I am not correct! I am going to answer you on our Main MAC page because I want you to get LOTS of support from our wonderful Community of caring people! You said: I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I'm looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a post op surgical floor, in nursing homes and for many years as an occupational health nurse.
=====
Jula, I am REALLY glad you found us! Welcome! It sounds like you have REALLY been through the wringer with all your health issues .. some that seem to go hand and hand with MAC. MANY of our Group have RA and GERD. I am hoping someone will jump in on the " loss of voice or raspy voice".

You may be new to MAC .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all on this shared journey .. we are here to help you .. support you in any way we can. We have "been there .. done that". Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum .. JUST like you seem to be doing! CONTINUE to do that .. read the Connect Forum to educate yourself to our shared MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,... concerns .. cares. We will be here. Sending you a hug in this tough time! Katherine

Jump to this post

@jula73 interesting, another NURSE with MAC. that is
becoming more of a common thread.
 

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

REPLY
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

REPLY
3 replies
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
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)
@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
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)
@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
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)
@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
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)
@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
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)
@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
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)
@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
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