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.

kathyhg | @kathyhg | Jun 10, 2019

Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat is azithromycin but I’ll do some more reading. I already have a pacemaker (is 63 and I got it at 55) so I’m super cautious about anything that affects my heart. I’ve been referred to a cardiologist and just waiting for the appointment. I’ll likely see my respirologist before I see the cardiologist, though, so I want to be prepared for that visit as well.

It might just be my experience but I find I need to be on top of things all the time. The respirologist I see treats a whole range of respiratory conditions and I think it’s time for a consult to the MAC specialist - thus my preparation. The respirologist told me st the onset of this process that he’d need to refer me if there were complications with my treatment.
I have leaned so much in this forum. Although no one gives advice, it is helpful to hear other people’s experience as this helps me to formulate questions and to make decisions about my own care.

Thanks again,

REPLY
2 replies
tdrell | @tdrell | Jun 10, 2019
In reply to @kathyhg "Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat..." + (show)
@kathyhg

Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat is azithromycin but I’ll do some more reading. I already have a pacemaker (is 63 and I got it at 55) so I’m super cautious about anything that affects my heart. I’ve been referred to a cardiologist and just waiting for the appointment. I’ll likely see my respirologist before I see the cardiologist, though, so I want to be prepared for that visit as well.

It might just be my experience but I find I need to be on top of things all the time. The respirologist I see treats a whole range of respiratory conditions and I think it’s time for a consult to the MAC specialist - thus my preparation. The respirologist told me st the onset of this process that he’d need to refer me if there were complications with my treatment.
I have leaned so much in this forum. Although no one gives advice, it is helpful to hear other people’s experience as this helps me to formulate questions and to make decisions about my own care.

Thanks again,

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@kathyhg....agree with you re all valuable information shared on this site....have you also signed into NTMINFO.org for links to additional information...or gone to youtube for videos...l just typed in "NTM info" and a whole slew of awesome videos showed up....these are just a few of the resources from the web sites......also National Jewish Health will be having their annual NTM workshop for NTM patients and families on Saturday Sept 21,2019 from 830am to 4pm in Denver if you live near there or can get there...great news....it will be video taped and posted on line a few weeks after the event...so we can hear /see it if we cannot attend...Tdrell

REPLY
1 reply
kathyhg | @kathyhg | Jun 10, 2019
In reply to @tdrell "@kathyhg....agree with you re all valuable information shared on this site....have you also signed into NTMINFO.org..." + (show)
@tdrell

@kathyhg....agree with you re all valuable information shared on this site....have you also signed into NTMINFO.org for links to additional information...or gone to youtube for videos...l just typed in "NTM info" and a whole slew of awesome videos showed up....these are just a few of the resources from the web sites......also National Jewish Health will be having their annual NTM workshop for NTM patients and families on Saturday Sept 21,2019 from 830am to 4pm in Denver if you live near there or can get there...great news....it will be video taped and posted on line a few weeks after the event...so we can hear /see it if we cannot attend...Tdrell

Jump to this post

Thanks. I follow that forum and have read material there. It’s also very good but I tend to come back to this one more. I’m in Canada so Denver is a big trip for me right now.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2019
In reply to @kathyhg "Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat..." + (show)
@kathyhg

Thanks. I’m on ethambutol, rifampin and azithromycin. The only one I see causes irregular heart beat is azithromycin but I’ll do some more reading. I already have a pacemaker (is 63 and I got it at 55) so I’m super cautious about anything that affects my heart. I’ve been referred to a cardiologist and just waiting for the appointment. I’ll likely see my respirologist before I see the cardiologist, though, so I want to be prepared for that visit as well.

It might just be my experience but I find I need to be on top of things all the time. The respirologist I see treats a whole range of respiratory conditions and I think it’s time for a consult to the MAC specialist - thus my preparation. The respirologist told me st the onset of this process that he’d need to refer me if there were complications with my treatment.
I have leaned so much in this forum. Although no one gives advice, it is helpful to hear other people’s experience as this helps me to formulate questions and to make decisions about my own care.

Thanks again,

Jump to this post

@kathyhg Hi Kathy! I really liked your last sentence. That is the precise intention of this group. I just met with my Mayo doctor last week and we discussed how each individual with mac should have a tailor-made treatment plan. Beware those that only use the Big 3 treatment plan or want to jump on those three meds at the first inclination of mac infection. BTW, my dr also said again that the biggest culprit of bronchiectasis and mac is GERD, otherwise known as acid reflux. If you treat that, then you may likely stop the infection and reinfection of mac. Many people have what is known as silent reflux; meaning there are no apparent symptoms. I make a list of questions before I see my dr also. When will you see your mac specialist?

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2019
In reply to @suzyqueue "I was diagnosed in January 2018. Still to this day - no improvement. I've had things..." + (show)
@suzyqueue

I was diagnosed in January 2018. Still to this day - no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.

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@suzyqueue Hang in there and stay on your meds. The Amikacin seems to have helped @heathert. Keep us posted.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2019
In reply to @kathyhg "I'm very curious about alternatives to the Big 3, which I've been on for 4 months...." + (show)
@kathyhg

I'm very curious about alternatives to the Big 3, which I've been on for 4 months. I have recently had side effects, which I believe are from the azithromycin and I'm seeing my doctor next week. I am not prepared to just tolerate the side effects because of the benefits of treating the MAC and will be asking for a referral to a MAC specialist in a larger city near us. The Amikacin sounds like an expensive but reasonable alternative (is it used alone or in combination with other drugs?) and it will be one of the things I will research and discuss with my doctor when I see him. Having MAC has already cost us a lot of money in terms of cancelled trips, reverse osmosis system, etc etc and had a huge effect on our quality of life so another cost is something that I can live with if I have to.

Thanks for everyone's contributions to this forum. I have learned here than anywhere else and, although I may have become a nuisance to my doctor, I feel it benefits me in my efforts to get this disease under control.

Jump to this post

@kathyhg I may have shared this with you before, but I have never been on the 'Big 3' for treatment of mac. I was put on alternating months of cipro and doxycycline for two yrs in 2013. I would take them for ten days each month. My mac cleared after one year . Then I got pseudomonas in 2016 and the doxycycline was replaced with inhaled tobramycin. that cleared my pseudo after 30 days. I remain on the tobramycin and cipro to this day. I take these on alternating months. After taking the first toby treatment, I was cough free after 28 days and remain good to this day. My regimen will not work for everyone because it will all depend on one's susceptibility test. BTW, I want to remind everyone to keep a hard copy of your susceptibility test and lab results for sputem.

REPLY
1 reply
kathyhg | @kathyhg | Jun 10, 2019
In reply to @windwalker "@kathyhg Hi Kathy! I really liked your last sentence. That is the precise intention of this..." + (show)
@windwalker

@kathyhg Hi Kathy! I really liked your last sentence. That is the precise intention of this group. I just met with my Mayo doctor last week and we discussed how each individual with mac should have a tailor-made treatment plan. Beware those that only use the Big 3 treatment plan or want to jump on those three meds at the first inclination of mac infection. BTW, my dr also said again that the biggest culprit of bronchiectasis and mac is GERD, otherwise known as acid reflux. If you treat that, then you may likely stop the infection and reinfection of mac. Many people have what is known as silent reflux; meaning there are no apparent symptoms. I make a list of questions before I see my dr also. When will you see your mac specialist?

Jump to this post

I am seeing the respirologist on June 19 and will get a referral to the Mac specialist either from him then. Not sure how long it will take.
I’m seeing a gastroenterologist in early September as I’m not aware that I have GERD but will discuss with him. How great would that be if treating GERD protected me in the future! Thank you for this encouragement.

I have learned so much about a disease that I’d never heard of before last year, most importantly that I need to educate myself and be my own advocate.

I am thankful that I found this forum as Mac is an isolating disease and the forum is one place where I don’t feel like I’m burdening others with yet more Mac talk :).

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2019
In reply to @kathyhg "I am seeing the respirologist on June 19 and will get a referral to the Mac..." + (show)
@kathyhg

I am seeing the respirologist on June 19 and will get a referral to the Mac specialist either from him then. Not sure how long it will take.
I’m seeing a gastroenterologist in early September as I’m not aware that I have GERD but will discuss with him. How great would that be if treating GERD protected me in the future! Thank you for this encouragement.

I have learned so much about a disease that I’d never heard of before last year, most importantly that I need to educate myself and be my own advocate.

I am thankful that I found this forum as Mac is an isolating disease and the forum is one place where I don’t feel like I’m burdening others with yet more Mac talk :).

Jump to this post

@kathyhg I am so glad that you found this site too. It was a Godsend to me when I first joined. Would that specialist you may get referred to in Toronto by any chance?

REPLY
2 replies
mariierod123 | @mariierod123 | Jun 10, 2019
In reply to @windwalker "@kathyhg I am so glad that you found this site too. It was a Godsend to..." + (show)
@windwalker

@kathyhg I am so glad that you found this site too. It was a Godsend to me when I first joined. Would that specialist you may get referred to in Toronto by any chance?

Jump to this post

I thought as we age we lose acid in our bodies ?

REPLY
kathyhg | @kathyhg | Jun 10, 2019
In reply to @windwalker "@kathyhg I am so glad that you found this site too. It was a Godsend to..." + (show)
@windwalker

@kathyhg I am so glad that you found this site too. It was a Godsend to me when I first joined. Would that specialist you may get referred to in Toronto by any chance?

Jump to this post

Yes. We’re about an hour from Toronto and I hear that he is well known to be a Mac expert. 🤞🏻

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