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 | Jan 20, 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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<br><br><br><br><br>NJH is supposed to be another fine medical institute. I have heard <br>wonderful things about that place too. I almost went there myself.<br> <br><br>

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Katherine, Alumni Mentor | @katemn | Jan 20, 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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@tdrell, Terri, I TOTALLY understand and agree. I just thought because of your questions you were considering Mayo. So sorry! It sounds like NJH is doing a GREAT job for you .. just make sure you keep us posted! We have our fingers .. and toes crossed for you! Hugs! Katherine

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 2017
In reply to @katemn "Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila ....." + (show)
@katemn

Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @del .. Del, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7, @jewel8888 .. Julie, @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, @marzz .. , @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pfists .. Shari ,@pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @worriedson, and anyone else I forgot to make note of!

Just a tip:
If you want to get to the VERY LAST POST ON OUR OUR FORUM .. OR TYPE A VERY NEW POST .. NOT A REPLY TO A POST:
1. Wherever you are on the Forum .. go to the VERY END of that particular page
2. At the bottom of the page you will see a square marked "LAST"
3. Hit "Last" .. it will take you to the very END/last page of our Mayo Clinic Connect

Hope your find this helpful! Hugs! Katherine

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<br><br><br><br><br>The Mayo does file with Medicare. They do in the Jacksonville <br>location.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 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>Katherine, has anybody told you today that you are AWESOME! Thank you for <br>the countless hours you give to this support group. You are a Godsend, and we <br>all appreciate you. HUGZ! -Terri M.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 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>Hi Julie, may I ask your pulmonologist's name? There are supposedly two <br>very good pulm drs there. I have a friend seeing one there now, and from what I <br>learned from him, he is being treated similarly to how I am at the Mayo. So, it <br>appears they are on top of things there too. -Terri M.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 2017
In reply to @colleenyoung "Hi everyone, The number of members talking about MAC/MAI/NTM and Bronchiectasis has grown so much that..." + (show)
@colleenyoung

Hi everyone,
The number of members talking about MAC/MAI/NTM and Bronchiectasis has grown so much that it was time to move the discussions into a group dedicated to MAC & Bronchiectasis. Please visit the new group page here: https://connect.mayoclinic.org/group/mac-bronchiectasis/ and follow the group by clicking + FOLLOW in the corner of the group description.

Everything else will continue to work as it always has. You will continue to get email notifications and connect with the people you know, and welcome new members.
Please let me know if you have any questions.
Colleen

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<br><br><br><br><br>A big THANK YOU to you too Colleen! So glad to have this forum.  <br>-Terri M.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 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>Julie, I too live in S.C. but, I beat feet to the Mayo in Jacksonville. So <br>glad I did. They were able to improve my quality of life ten fold!  Try to <br>get down there if you can. -Terri M.<br> <br><br>

REPLY
melrosedecosmo | @melrosedecosmo | Jan 20, 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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Hi windwalker, I will be moving to SC, soon. Where in SC do you live? I also use the Mayo in Jacksonville.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 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> <br>Hi Pamela, since I was treated at the Mayo for MAC, I can walk WAY more and <br>not get winded. Some days I still do though. But, there was a time I could not <br>walk 15 ft in my house without having to sit down and catch my breath. I can now <br>ride my bike for many miles. I do not cough any more. For years, I coughed <br>constantly. My MAC treatment is different than most. I am being treated with <br>tobramycin, a nebulized medication. It goes directly to the lungs, therefore not <br>having to go through your whole system. Plus, it is easier on the liver. It has <br>made a huge difference in my health.  -Terri M.<br> <br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 20, 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>Hello, I live in Bluffton, near Hilton Head. You?<br> <br><br>

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