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!

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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 18, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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Hello Kate! I am from Richmond, Va. also. I now live in Bluffton, S.C. near the shore. This location is less cold and damp than Richmond and I do a lot better here. I go to the Mayo clinic and love it. They helped me tremendously. If you get worse, you can stay overnite here, I am 2 1/2 hrs from the Mayo. Just putting that out there. I am on a regimen of tobramycin for 28 days, then 10 days off , then 10 days on cipro, then 10 days off, then back on tobramycin for 28 days. this has knocked the MAC colonies way down as well as the other fungals that take up residence in my lungs. Just know that there are other treatment options out there. You have to be careful that it doesn't suddenly multiply and do irreparable damage to your lungs.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 18, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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@windwalker, Terri, thank you for your good information .. it helps all people! Which Mayo location do you go to .. phone number you call for an appointment .. name of doctor you have worked well with .. what hotel there have you found good to stay at? All this information is helpful to people as they read past pages when they are new to our Forum. Thank you for your help! Hugs to you! Katherine

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 18, 2017
In reply to @dianelobosco "Thank you all for tour support. I mustbif read the post wrong as it said "CAN..." + (show)
@dianelobosco

Thank you all for tour support. I mustbif read the post wrong as it said "CAN I CALL YOU Diane" i guess i was. It thinking clearly and undertiod wrong. She was implying to refer to me as Diane. Can I blame it on MAC?

On another note, i undertand people have weight loss, is it a lot? I would nit mind losing some pounds.

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Believe me, I have been eating the heck out of chocolate, extra spoonful of sugar in my coffee, etc. I put 2.5 lbs on last week and it is sticking, so I am hoping that means I am regaining health. I am 5-5 1/2" and dipped down to 117 lbs!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 18, 2017
In reply to @lindam272 "Keep in mind that maintaining an appropriate body mass index (BMI) is one of the greatest..." + (show)
@lindam272

Keep in mind that maintaining an appropriate body mass index (BMI) is one of the greatest way to help keep your lungs healthy - not that any of us here have healthy lungs...but it will help to maintain what health we have left. Body mass index (BMI) is a measure of body fat based on height and weight that applies to adult men and women. You can Google "body mass index" and get yours calculated and/or find out what your ideal BMI should be. I had to gain weight to achieve the appropriate BMI. I hated doing it - no more flat tummy and couldn't fit into my clothes anymore, but I will trade that for maintaining what little health I have left in my lungs any day. Linda

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I agree Linda.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 18, 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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Hello Julie, I am Terri M. I too live in S.C. in Bluffton. I see that you live in S.C. also. I hope it isn't in my area because you will not get proper care here. I have gone thirty years with getting misdiagnosed or just sent home with antibiotics. Meanwhile, my lungs were being destroyed because a sputem test was never done to get the correct antibiotics. I now have only 1/3 of my lungs left. it is EXTREMELY important to seek out the proper help. I started treatment at the Mayo three yrs ago, and I can tell you, my quality of life is so much better.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 18, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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<br><br><br><br><br>Hi. I'd be happy to share my info. I go to the Mayo Clinic in Jacksonville, <br>Fl. and I see Dr. Leventhal (pulmonologist) he has been a real blessing and life <br>changer for me. The Mayo has an easy to use website with a "make an appointment <br>' tab. You do not need a referral. They have a dept to ask if your insurance <br>will cover you there. They are a non-profit hospital, therefore, they don't <br>gauge on pricing either. Hope this helps.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 18, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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<br><br><br><br><br>Hello. I have a feeling the GERD came first, leaking digestive juices <br>up into the esophagus and thus inspiring some of it where it then damages the <br>lungs. then, damaged lungs cannot fight off the Mac and other fungals and <br>microbials. <br> <br><br>

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heathert | @heathert | Jan 18, 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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Hi @cila I also had terrible gerd I was on 2 omeprazole a day and sometimes it diddnt help but now I have been GERD free for a few months and off the meds for GERD, my gastro said I have probably broken the cycle or adjusted to the MAC meds,which is great so hang in there, hopefully it will get better.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 18, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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@windwalker, Terri, my understanding .. the connection between GERDS and MAC .. is that what gets into the lungs from the GERDS .. becomes a 'breeding ground' for the mycobacterium .. just like the sputum from Bronchiectasis becomes a breeding ground for the mycobacterium. So it really isn't the 'damage' .. it is really material that sits there and becomes a breeding ground for the mycobacterium because it is 'foreign' .. NOT expelled in a normal bodily process. Hugs to all! Katherine

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 18, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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@pamelasc1 You asked "is there any way to change the settings on my account, so that I just get the Digest at the end of each day, and/or just get responses to emails I send?"

Here are some suggestions:
1. Follow only those groups you are interested in, for example the "MAC & Bronchiectasis" group https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Go to your Account Settings here: https://connect.mayoclinic.org/account/
3. Scroll to Notifications section of the page.
4. Choose the time of day you would like to receive the daily digest.
5. Be sure to tick the box that says "Only include the specific threads and groups I follow in my digest."

If you wish to unsubscribe from receiving individual email notices for every post made to a discussion, simply click "Unsubscribe from this discussion thread" at the bottom of the email.

For more helpful tips on using Connect, see this page https://connect.mayoclinic.org/get-started-on-connect/

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