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.

irene5 Irene Estes | @irene5 | 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.

Jump to this post

I have had huge weight loss in association with MAC - not a good plan at all for me. My doctor has me on three nutritional drinks per day. If you lose weight, please give it to me.Irene

REPLY
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)

Jump to this post

I have both also.

REPLY
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.

Jump to this post

I have lost a lot of weight also. Went down 4 dress sizes from a size 10. Am back to my high school weight. It is a struggle to keep weight on.

REPLY
Katherine, Alumni Mentor | @katemn | 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.

Jump to this post

@windwalker, Hi Terry, I also lost quite a bit of weight through the process .. 18% of my body weight. I am a small person .. 5'2.5 and have never had a weight issue so that was really a lot. I am NOT proposing this to ANYONE but I based on what was going on .. I took terrible advantage of it! I had bacon for breakfast every morning and 1/5 quart of my favorite ice cream every night! It was GLORIOUS!! Now keep in mind .. I did NOT have any cholesterol or diabetes problems .. nothing that would preclude me from this but common sense!! So I just had fun with it! The day I was back to a normal weight was a sad day. I had to BAN ice cream from my home ..it is my very favorite vice! I knew if I was in the house .. I'd eat it . so never more! But had fun while it lasted! Lemons out of lemonade! Keep in mind I would NEVER recommend my foolishness to anyone else . just thought you'd get a kick out of MY remedy! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | 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.

Jump to this post

@dianelobosco, ,. you ARE are NOT Diane? Yes, for me you will see below that I lost 18% of my body weight .. BUT did gain it back. So IF you want to lose and keep it off .. I would just maintain healthy eating habits throughout the WHOLE process! Hugs! Katherine

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)

Jump to this post

@ehliny, I can't remember if I have asked you if you have a first name? Care to share it? My note on Gerds:

GERDS is very common .. either before or after meds. I had it prior to meds .. I think a result of a terrible bout of pneumonia in 2003 and multiple prescriptions of antibiotics and steroids .. just ripped up my stomach. Dr. Aksamit said it is thought there is a connection between GERDS and MAC .. as well as Bronchiectasis. Hope this helps clarify! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 18, 2017
In reply to @irene5 "NTM is non tuberculin mycobacterium. Irene" + (show)
@irene5

NTM is non tuberculin mycobacterium. Irene

Jump to this post

NTM IS Nontuberculous mycobacteria

REPLY
lindam272 | @lindam272 | Jan 18, 2017

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

REPLY
1 reply
lindam272 | @lindam272 | 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

Jump to this post

So then what do they attribute the mucous to? Has that subsided?

REPLY
Katherine, Alumni Mentor | @katemn | 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

Jump to this post

My dear Terri! I am SOOOO happy for you .. you are just a terror when you get started .. you are unstoppable! I am SO proud of you .. and SO happy for you!! ALL A PART of you doing your 'due diligence' .. educating yourself .. being your best advocate .. I am so proud of you!

The ONLY question I have is .. will there be ANY follow up? Sputum tests on a semi annual basis that will be cultured? Because ' 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.' The MAC found at that time may be 'stable' .. but my understanding is it can colonize at any time based on many factors .. that MAC did not magically disappear .. so I just hope you have ongoing sputum cultures that verify you are STILL 'stable'

I also have GERDS and sleep with a bed elevated .. it is a great idea! My husband has sleep Apnea .. just make sure to keep the equipment properly cleansed .. that air goes right into the lungs. Make sure you let us know how the culture report come out!

I just am SO happy for you! Thank you for all the good information and letting us know how things went! I am sending you a BIG hug! Katherine

REPLY
View MoreView Less
Please sign in or register to post a reply.