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.

Katherine, Alumni Mentor | @katemn | Jan 23, 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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@windwalker, Terri, I am just catching up with posts .. ignore any that are redundant! I SOOOO agree with you! Before I learned to do my 'due diligence' I later found out my husband Oncologist that we had been referred to (somebodies' buddy?) was NOT even a leukemia/blood oncologist .. he was a COLON CANCER specialist. My husband had been going to him for years before I got sick with MAC and learned to do my OWN 'due diligence' and THEN found him a proper CLL Oncologist who REALLY got him going on the proper program .. AT A TEACHING University Hospital .. NOT a profit making doctor's office!! I have learned the hard way to seek doctor's young enough to have the newer knowledge .. BUT old enough to have had a few knocks on the head .. EXPERIENCE!

SOOO sad that you had to lose so much lung function to poor doctors .. such a rip! Terri, this is so well said .. and so important .. I have added it to my 'File Cabinet" .. and may quote you in the future. Our lungs are SO important .. and we just can't mess around with them! Sending you a hug!! Katherine

REPLY
tdrell | @tdrell | Jan 23, 2017
In reply to @jillnc "Hello - I thought I'd post an update as my ID Drs here in NE were..." + (show)
@jillnc

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.

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Jillnc.....years ago when i had a confirmed allergy (x2) to all NSAIDS think motrin, aleve, celebrex and my hip was bone on bone. I needed effective pain control yet only tyelenol and narcotics were options. My allergist said one option would be to put me in ICU and to start giving me Pharmacy prepared tiny dosages of a selected NSAID and increase the strength slow but surely. He would be in attendance the whole time.....and PRIOR to doing this, I would need to have all my affairs in order and realize I might not survive the procedure. I opted to continue using large doses of tyelenol and then have the hip replaced.
So I guess I question the desensitization being done as an outpatient.TerriD

REPLY
tdrell | @tdrell | Jan 23, 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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Jewell8888....have you seen the youtube videos of the mycobacterium workshop sept 2016 from National Jewish Health .....Nationaljewish.org/videos2016
There are 35 to 45 minutes of varying related topics. I
I wonder if you will be treated with IV Amikacin prior to surgical removal of lung tissue?

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @colapyrus "I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have..." + (show)
@colapyrus

I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have been reading the the previous posts (pages 1-10, 18-23) and have not read about many people having surgery to take out the damaged part of the lungs. My culture was negative for MAI for the first month and then it showed positive at the end. I'm assuming that means I don't have a high concentration of the bacteria in my lungs yet. The sample came from a bronchoscopy so I think it is reliable. My doctor has mentioned that I might be a good candidate for surgery but I'm not sure what that means. I haven't been to see an Infectious Disease dr yet or surgeon to talk about treatment but I thought I would ask the question here since you have been in the trenches so to speak. If they took out the right middle lobe (where the bronchiectasis is located) would I still be put on the meds treatment? Would they probably want me to be on the meds until I have the 12 months of negative sputum results before the surgery? Just wondering if anyone has any thoughts on this? Thanks. Jan

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@colapyrus, Jan, Welcome to our Forum, I'm so glad your found us! If you have read many pages .. you know I am a pretty straight shooter .. say it as I see it. Well, if I was sitting in your shoes .. I would never set foot in again in the doctor's office who even mentioned lung surgery! Get thee to a GOOD Infectious Disease Doctor who specialized in MAC .. at least .. or if you can afford it .. get to Mayo Clinic, Rochester MN or National Jewish! BUT DO IT!! Your health is at risk! Do your 'due diligence' .. educate YOURSELF by reading the pages of our Forum. Keep coming back .. keep asking questions .. we are all on this same journey together! Hugs to you on this beginning time! Katherine
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@windwalker, Terri, really good response, I so agree with you. I would also refer Jan to a another post that was made if you don't mind because I felt it was just excellent!

DOCTORS .. VOICE OF EXPERIENCE .. PROFIT MOTIVE
FROM MEMBER @windwalker Terri I will be going out on a limb here by saying this, but I feel compelled to. I have lost precious lung function over the years by seeing 'the best pulmonologists in the city', of any city I have lived in. This is lost lung function I will never regain. I have found that many drs (with great references) are not really staying current, nor have the time for delving into specifics. Lungs are the most delicate organs you have, I would not trust them to just anybody. Only go to highly reputable medical centers that are cutting edge. i.e. Mayo, NIH, John Hopkins, to name a few on the east coast. - I sincerely hope I did not offend anybody. I know there are good drs out there, but they are hit or miss in the 'for profit' segment.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 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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https://www.nationaljewish.org/ntmvideos2016

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 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, .. and Terri my Dear .. it is people like you who keep me going at 1am in the morning after spending over five hours at this! Now it is off to bed! With a hug to you .. and knowing I am getting one back from so many of you! Katherine

REPLY
jillnc | @jillnc | Jan 24, 2017
In reply to @jillnc "Hello - I thought I'd post an update as my ID Drs here in NE were..." + (show)
@jillnc

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.

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@tdrell that's interesting. Yes there has to be a nurse to monitor me. And they are putting me on 3 other allergy type medications. And they say if I miss a dose after doing this I will have to have it done again. She said they always want to see if they can go with a different drug, but if not they can desentatize (trick my body). Maybe it has to do with the reaction of the drugs they are desensitizing the person to and the persons medical condition. I mentioned this to the drs at mayo as well and the ID dr there seemed liked it was a good idea as well. I definately trust my medical Drs I've found and that was confirmed when I went to mayo. The ID dr up there said he agreed with everything my ID drs at home were doing. It's the Pulmonary Drs I don't always agree with what they say. Thank you for sharing your experience with me.

REPLY
pamelasc | @pamelasc1 | Jan 24, 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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This is Pamela - several of you have mentioned follow-up sputum tests which I get the impression should be done on a regular basis once one has completed the 18 month regimen of antibiotics.  I do understand the reason for doing this as we never get rid of the MAC but only get it stable.  For those of you who are no longer on antibiotics, how often do you get the sputum tests?  I have bronchiectasis as well, so clearly the sputum from that (which I will have for life) could continue to become a breeding ground for the MAC, so it makes sense that I should have the sputum tests for life also - right?  And if so, is every 6 months reasonable, or should it be more often?   Pamela   

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 24, 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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<br><br><br><br><br>I was diagnosed w/MAC in 2005. I was a single mom at the time and dealing <br>with a wild teenager and stressful job. All three drs were pulmonologists and <br>were the best in their cities (Richmond, Va. and Tucson, Az.) Not a one <br>suggested I see an ID doctor; I didn't even know there was such a doctor. <br>Because of my situation at the time, I did not have the where-withall to <br>investigate. My doctor at Mayo told me that, yes, since I did not get proper <br>care in the last 20 yrs that my lungs are severely damaged. He said it was a <br>shame because a lot of it could have been preventable. We are not sure if doing <br>the three drug treatment would have been the answer either because I have other <br>genetic things going on that are causing my lungs to deteriorate. Like I said <br>before, my system is so delicate that I didn't want to tax my liver, that is why <br>I declined the 3 drug treatment. The one antibiotic they gave me sufficed and <br>knocked the colonies down back in '05. They didn't come back until <br>1013.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 24, 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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<br><br><br><br><br>The first pulmonologist I saw strongly wanted me to do the 3 drug <br>treatment, then, two others said they wouldn't do it if they were me. Their <br>biggest concern was for the liver. Then, when I read more about it, I chose not <br>to. I read it does not 'cure' you of the disease and it could come back, so I <br>was thinking of my liver. So far, the one antibiotic courses seem to be keeping <br>the MAC in check. I battle pseudomonas and aspirgillus as well. My lungs have no <br>fight left in them.<br> <br><br>

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