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 23, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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<br><br><br><br><br>Hello. I am so glad you are getting treatment that works for you. You are <br>fortunate to have found a competent doctor. I have been battling lung <br>issues since I was 35 yrs old (am now 58). I went to local <br>pulmonolgists all of those yrs. Every time I would get a flare up of lung <br>infection; I would be put on a two week round of antibiotics and that was it. I <br>would become sick again, same routine. After 20 years of not knowing why I was <br>sicker than other people, I decided to go to a non-profit teaching institution <br>where I knew they would be interested in finding out why I was chronically sick. <br>Turns out, I have a genetic disorder that even the Mayo cannot figure out, but <br>they DID know to put me on alternating monthly prophylactic antibiotics. We are <br>not all standardized with 'MAC' or bronchiectasis, there sometimes are other <br>underlying diseases that are bringing these on. Sometimes it takes a highly <br>specialized doctor to figure it out. There are no competent pulmonologists where <br>I live now. I honestly don't think I'd be alive if I had not gone down to the <br>Mayo.<br> <br><br>

REPLY
irene5 Irene Estes | @irene5 | Jan 23, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

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Yep! Ditto that! My mom, my aunt, and now me!! Irene

REPLY
jillnc | @jillnc | Jan 23, 2017

Hello - I thought I'd post an update as my ID Drs here in NE were unsure if there was a protocal to be desentatize to one of the drugs I found out I was allergic to last fall. As I was weened off predisone, for an autoimmune issue, I started developing an itchy rash to Ethambutol. My ID Drs put me in touch with an allergist. Depending on what she says about me having RSV right now, I am supposed to be desentized a week from today. The allergist says she's never done this particular drug before, but has done a lot of others. It'll take all day at an outpatient center and maybe a part of the next, will have to see since she hasn't done this one before. I should note I have had clear cultures of MAC since August and I've been off Ethambutol since mid Oct. My timing of my mayo clinic trip, the holidays and restricted days the allergist does this have resulted in the longer than normal wait, but was assured by my ID Drs that a few months in the world of MAC isn't bad because of how slow it grows and my last cultures in Nov were clear. I know I haven't read ALL information on this page, but wonder if anyone has been desentized to this drug before and how it went for you? (I know results are different for everyone). Thanks.

REPLY
3 replies
Katherine, Alumni Mentor | @katemn | Jan 23, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

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@windwalker, Terri, I am SO curious! You said .. 'I got opinions from three drs when first diagnosed with MAC on whether to
do the three drug treatment. Two out of three said they would not do it because there is only 50% chance it would work and it is hard on the liver.' Were the THREE doctors you are talking about INFECTIOUS DISEASE doctors knowledgeable about MAC?? You are now a smart cookie having done your 'due diligence' here on our Forum so you well know if/or NOT a doctor was/was not knowledgeable about MAC. I am really curious .. in retrospect .. do you think they told you correctly??

I am wondering because now Mayo IS treating you properly with antibiotics .. BUT you say .. ' I may need a lung transplant in the near future' .. my question is: IF your THREE DOCTORS had NOT told you NOT to do antibiotics initially .. MAYBE might not need a lung transplant now??

Just wondering .. because I know I refused antibiotics out of fear initially .. UNTIL I got a SECOND serious mycobacterium. Just wondering if your mycobacterium colonized more because like me you didn't go on the antibiotics soon enough? What is done is done .. but it would be good information for our Forum. Hope you don't mind me asking! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

Jump to this post

@windwalker, Terri, that you have a genetic reaon is so interesting! I have mentioned before that I showed Dr. Aksamit a report from 23andme my what doctors refer to as a 'spit test' .. that showed I had a genetic predisposition to lung issues .. he did NOT laugh at me .. in fact was interested . and asked if he could keep the copy of the report. INDEED I am convinced someday they will find genetic connections between MAC and many other diseases!

Thanks heavens you came to Mayo .. 'mecca' to many in the world! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 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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Terri, really good information for our Forum .. thank you! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 2017
In reply to @tdrell "Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast..." + (show)
@tdrell

Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast bacillus which mycobacterium are......and also "mycobacterium culture" which if I understand correctly is cultured differently than everyday sputum cultures.

Also I think part of the situation with GERD and NTM might be as Follows:
I Take a medication that lessens the acid in my stomach.....so NTM in there from drinking water or ice are not affected from an acid stomach environment.....stomach materials back out of stomach.....and are aspirated into lungs. And these materials from the stomach contain NTM which are now in lungs.if there is a suitable environment for them in lungs....they stay and multiply and start causing symptoms.

The above does NOT apply to the NTM that are inhaled directly into the lungs from soil or water sources such as hot tubs or showers.
Katherine or others....does this all sound correct? TerriD

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@tdrell, Terri, you're just getting too smart! I had to google to confirm it .. but you are correct!

SPUTUM CULTURE FOR MAC
In patients who may have pulmonary infection with Mycobacterium avium complex (MAC), diagnostic testing includes acid-fast bacillus (AFB) staining and culture of sputum specimens. If disseminated MAC (DMAC) infection is suspected, culture specimens should also include blood and urine

The Notes I have on GERDS:
*From Member @tdrell Terri who was diagnosed at National Jewish Health for MAC in Denver * 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 plus silent aspiration during day into my lungs. * .....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.
*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.

On hot tubs and showers: the THEORY .. no prove research is that when the water is "aerosolized" it is breathed into the lungs .. if there is sputum in the lungs .. the sputum becomes a breeding ground for the mycobacterium as the "aerosolized" water gets into our lungs.
Same with soil .. as you garden .. as the soil is disturbed it becomes "aerosolized" .. same process in theory,

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 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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@chinasmom .. Thank you Becky .. it is nice of you to say that! When our 'Boss' Colleen told me that for each person that actually posts .. that we have hundreds of 'silent observers' who read our Forum .. I was just blown away .. I had no idea! I away say that I just stay here in my own little world trying to make a difference by helping people on my own same journey .. I thought it was just our own little group. It is really nice to know we are all helping so many more we don't even know about! Glad to know we are helping you in some small way. Sending YOU a hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 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

<br><br><br><br><br><br><br><br><br><br><br><br><br>Hugs,<br>   Katherine<br><br><br><br><br><br>

REPLY
tdrell | @tdrell | Jan 23, 2017
In reply to @tdrell "Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast..." + (show)
@tdrell

Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast bacillus which mycobacterium are......and also "mycobacterium culture" which if I understand correctly is cultured differently than everyday sputum cultures.

Also I think part of the situation with GERD and NTM might be as Follows:
I Take a medication that lessens the acid in my stomach.....so NTM in there from drinking water or ice are not affected from an acid stomach environment.....stomach materials back out of stomach.....and are aspirated into lungs. And these materials from the stomach contain NTM which are now in lungs.if there is a suitable environment for them in lungs....they stay and multiply and start causing symptoms.

The above does NOT apply to the NTM that are inhaled directly into the lungs from soil or water sources such as hot tubs or showers.
Katherine or others....does this all sound correct? TerriD

Jump to this post

Dear Katherine....any and everything I know about MAC etc is due to the motivation acquired from you! Terrid.

REPLY
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