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.

gggolfs | @gggolfs | Jan 18, 2017

sugar is not the answer more complex carbohydrates and protein would be better , don't forget fruit and vegetables

REPLY
1 reply
Katherine, Alumni Mentor | @katemn | Jan 18, 2017
In reply to @gggolfs "sugar is not the answer more complex carbohydrates and protein would be better , don't forget..." + (show)
@gggolfs

sugar is not the answer more complex carbohydrates and protein would be better , don't forget fruit and vegetables

Jump to this post

@gggolfs, GG .. you are ABSOLUTELY right on .. thank you for a really good answer!! 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

Colleen, thank you so much for answering this .. I did not know how to answer! Not that techie! Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 18, 2017
In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)
@marier

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

Jump to this post

<br><br><br><br><br>Me too!<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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fantastic @tdrell great news!

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.

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@windwalker, Terri, I feel like I am a BAD person telling about my ice cream .. wish I could delete it! MUCH better information from GG below .. PLEASE listen to her .. NOT me .. MUCH more sensible advice!! (I DO love fruit of all kinds .. THAT is a healthy sugar!) Hugs to all! Katherine

Posted by @gggolfs, 17 minutes ago
sugar is not the answer more complex carbohydrates and protein would be better , don't forget fruit and vegetables

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

<br><br><br><br><br>Hi Ladies. Oh, I eat way too healthy. The chocolate and sugared coffee are <br>my recent indulgences!<br> <br><br>

REPLY
tdrell | @tdrell | Jan 19, 2017
In reply to @gggolfs "Diagnosed 6 months ago. Have occasional bouts of bloody cough. Do not have a chronic cough..." + (show)
@gggolfs

Diagnosed 6 months ago. Have occasional bouts of bloody cough. Do not have a chronic cough that keeps me up at night but it's obvious to others that I'm constantly clearing my throat coughing occasionally. I'm extremely fearful to go on the protocol & do not want my life to change completely. I live a fairly active life busy entertaining , playing golf and working as a hairstylist in my own business. What is the life expectancy from time of diagnosis with and without treatment?

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Gggolfs.....get that mucus out....have Dr order a lesson with good respiratory therapists and get an aerobika and use it tdrell

REPLY
tdrell | @tdrell | Jan 19, 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

Lindam....concluded that the mucus and the evening only cough is from the GERD.....silent aspiration during day into lungs and at night as well as new diagnosis of the allergic rhinnitus( runny nose due to allergies)?
I used to drink gobs of water for my asthma....to keep mucus thin.....Gerd fluid restriction is 6 ounces an hour including yogurt ice cream....no eating 3 hours before sleep...no laying on right side when sleeping....anatomically it encourages fluid from stomach to go into lungs....i need to buy a new bed that the head elevates 30 degrees.
I am using most of restrictions and doing nasal wash and aerobeka and quantity of mucus less and lessened coughing in evening.
They say that my sleep apnea worsens the GERD etc...so will see Pulmonologist locally to get equipment etc for cpap
When I use my newly issued aerobika, to bring up the mucus from lungs, I can feel drainage coming from nose going to ??
My local allergist was eager to know the results, so that I assume he will see if the flonase nasal spray and singulaire and antihistamines will cover the nose issue tdrell

REPLY
tdrell | @tdrell | Jan 19, 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

Katherine...re GERD predisposing to MAC /Bronchiechtasis issue...I read or heard on The NJH videos that it is an issue....which comes first...the chicken or the egg.tdrell

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