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.

Katherine, Alumni Mentor | @katemn | Jan 17, 2017
In reply to @david1952 "Hi Y'all! Been following nebulizer talk. I'm prescribed neb. 3 times a day with two drugs-..." + (show)
@david1952

Hi Y'all!
Been following nebulizer talk. I'm prescribed neb. 3 times a day with two drugs- albuterol and budesonide. I don't get up any phelm after but do get some about 4 times a day. I don't think I have dry bronchiectasis as I'm coughing up phelm at times. But I'm also not getting any phelm after using my aerobika device. Is there a connnection between how much sputum and how clear your lungs are?
Hugs from David

Jump to this post

@david1952, Hi David, I think this is a question for your doctor .. AND when you have an answer PLEASE share it with us because I think it would be a really good thing to know. I have wondered the same thing. I cough up a LOT of sputum but have really only judged it by how much "yellow" which I have figured meant some type of infection. I think for me I have been so focused on my MAC that I have not spent enough or ANY time talking to my Dr. Aksamit about the Bronchiectasis Only recently when someone mentioned "dry Bronchiectasis" did. I become aware of it .. googled it and learned more about it. Much better I think because "dry" does not become a new breeding ground for mycobacterium to grow.

We can all share information we learn about Bronchiectasis!. Remember Paula shared:
@Paula_MAC2007 Paula RE: Bronchiectasis -- I subscribe to "Bronchiectasis News Today". Lots of good info. Main site: https://bronchiectasisnewstoday.com/
Sample Weekly Digest you can sign up for: http://us5.campaign-archive1.com/?u=52c64784d386bd00ea57ee792&id=33155d084e&e=551e0ae719
You can easily get past issues of the Weekly Digest:
http://us5.campaign-archive2.com/home/?u=52c64784d386bd00ea57ee792&id=d9df0e1c03
Hugs to all!

REPLY
tdrell | @tdrell | Jan 17, 2017

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

REPLY
25 replies
gggolfs | @gggolfs | 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

Jump to this post

Hi Kate thank you so much for your reply and encouragement. I do know that this forum is a wonderful asset to all of us suffering the same disease/ infection. I live in Richmond Virginia so the Jewish in Boulder and the Mayo are so very far from me. I'm just trying to hold steady right now. Doesn't seem to be growing . My CT the other day wasn't very remarkable.   Honestly that gave me confidence. I never have any mucus when I cough up the blood it's usually just blood a couple of tablespoons I haven't heard anyone else mention blood... it ends as quickly as it begins these little episodes. Ninety-nine percent of the time my cough is totally unproductive. Usually it's just a dry cough I think mostly associated with post nasal drip. I am not averaging once a month coughing blood I went over 3 months having no episodes..  it's the stress of the unknown..Sent from Yahoo Mail on Android

REPLY
gggolfs | @gggolfs | 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

I'm sorry must of missed this earlier but what does NTM stand for?  GGSent from Yahoo Mail on Android

REPLY
irene5 Irene Estes | @irene5 | Jan 18, 2017

NTM is non tuberculin mycobacterium. Irene

REPLY
2 replies
EHLINY | @ehliny | Jan 18, 2017

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

REPLY
36 replies
gggolfs | @gggolfs | 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

Thank you!

REPLY
Jennifer | @megan123 | Jan 18, 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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Tk u so much for your info. I will look into a second opinion asap

REPLY
dianelobosco | @dianelobosco | Jan 18, 2017

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.

REPLY
7 replies
irene5 Irene Estes | @irene5 | 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

Yes there is. I have both. Irene

REPLY
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