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.

tdrell | @tdrell | Jan 21, 2017
In reply to @kaystrand "I'm having a tough time finding the message about Medicare and Mayo. I've been going to..." + (show)
@kaystrand

I'm having a tough time finding the message about Medicare and Mayo. I've been going to Mayo with my Medicare and supplemental plan for 6 months. EVERYTHING has been covered except an appointment with the pharmacist for 250! Mayo DOES accept Medicare, they are great.

Kay strand

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Katherine...as others have said....you are GREAT,!!! thank you for all you do for our support group. TErri D

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Katherine, Alumni Mentor | @katemn | Jan 21, 2017
In reply to @kaystrand "I'm having a tough time finding the message about Medicare and Mayo. I've been going to..." + (show)
@kaystrand

I'm having a tough time finding the message about Medicare and Mayo. I've been going to Mayo with my Medicare and supplemental plan for 6 months. EVERYTHING has been covered except an appointment with the pharmacist for 250! Mayo DOES accept Medicare, they are great.

Kay strand

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Thank you Terri .. I KNOW you appreciate it .. I well remember your beginning! Big Hugs! Katherine

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @tdrell "Folks here is my report after my 6 day workup at National Jewish Health for MAC..." + (show)
@tdrell

Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI......multiple tests. My local pulmonologist sent me to local ID doctor in OCtober......but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks.....

I do not show indications of the infection hence do not require treatment.

The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it...NTM is in tap water....it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much...I dont have the typical NTM symptoms....fatigue,chills,weight loss,fever....only the cough and mucus.
The final outcome after tests and analysis:

-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ....weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think.....had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell

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<br><br><br><br><br>Hugs back!<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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<br><br><br><br><br>He is my dr too. I LOVE him!<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @kwilbur "I, too, have a cavitary nodule in my right upper lobe but it has decreased in..." + (show)
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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<br><br><br><br><br>Good luck with your search. Please let us know what you find out. (I'd <br>still drive down to Mayo in JAX, they are pretty wonderful down there).<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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<br><br><br><br><br>I would like to add that the other reason I believe they are treating mine <br>differently is that they might think I don't have time on my side for a long <br>term treatment. They think I may need a lung transplant before long, and could <br>come up suddenly. In the event it comes sooner, then the MAC is knocked <br>down enough for surgery.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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<br><br><br><br><br>I also want to add; that medication is horrendously expensive. Without <br>secondary insurance, the co-pay is $500.00.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @kwilbur "I, too, have a cavitary nodule in my right upper lobe but it has decreased in..." + (show)
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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<br><br><br><br><br>I will be going out on a limb here by saying this, but I feel compelled to. <br>I have lost precious lung function over the years by seeing 'the best <br>pulmonologists  in the city', of any city I have lived in. This is lost <br>lung function I will never regain. I have found that many drs (with great <br>references) are not really staying current, nor have the time for delving <br>into specifics. Lungs are the most delicate organs you have, I would not trust <br>them to just anybody. Only go to highly reputable medical centers that are <br>cutting edge. i.e. Mayo, NIH, John Hopkins, to name a few on the east coast. - I <br>sincerely hope I did not offend anybody. I know there are good drs out there, <br>but they are hit or miss in the 'for profit' segment.<br> <br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @katemn "128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila,..." + (show)
@katemn

128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, and anyone else I forgot to make note of!

HELP! Does anyone use a Mac computer? I use a Windows 10. So on my screen when I get an email .. at the bottom it says "View and Reply". When I hit that it takes me to your post. I read your post. Below your post it says "Reply". If I hit that .. it then takes me to a space where I can answer you.

OR below "Reply" it has two symbols:
1. a "heart" which if I hit .. you will receive an email that I "liked" your post.
2. a "flag" .. frankly I don't have a clue what that is for! Never used it .. sorry!

QUESTION: On a Mac computer .. do you see a ..1. a "heart" which if I hit .. you will receive an email that I "liked" your post. per the above??

Not being familiar with the Mac computer I am at a loss for an answer .. please jump in if you know an answer to the question if the "heart" appears like in Windows .. OR if in a different manner! Thanks to all! Katherine

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<br><br><br><br><br>I created a folder named MAC and save some posts w/good info into it.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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<br><br><br><br><br>Hi Pamela, it stinks, but we all have something to mourn concerning this <br>disease.<br> <br><br>

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