(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@pamelasc1

Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis (like myself) for more than 6 years has ever gone through a period of night sweats. And if so, whether they eventually go away. Mine began about 6 weeks ago and they are nightly, waking up with the sheets drenched and my pajamas drenched. Aside from this, I am feeling quite well, with my lungs more or less clear for the time being. My GP feels that it may be a result of the MAC and low immunity, though I am having some blood work done to rule out other issues. Thank you for any information. Pamela

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Hi Pamelasc..have you had a recent sputum done and culture grown, too see what’s going on..I too have all 3 bacteria…Pseudomonas is a tricky bacteria….and/or a recent CT scan.. to see your lungs progress..this way you will no for sure

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@pamelasc1

Thanks Sue for this info – did you ever have them when you were feeling fine? Which I am right now. Pam

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Yes, but I have what I call a "broken thermostat" from an earlier case of heavy metal poisoning and one of my meds can have excessive sweats as a side effect. I look for a combo – lower energy, sweats and trouble breathing to determine whether it's my lungs or my other issues. That's when I up my precautions.
Sue

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Me, too, Sue, my thermometer doesn’t go all the way to the top either!

Liked by anniepie

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Hi Pam and Irene I just wanted to be sure that you and others know that there is a side effect of arikayce that can affect the kidneys and I had that and my creatinine went up to 1.53 —too high! I had to go off of arikayce. Bad because I thought that it was helping me and that was a good thing that’s about the only thing that’s affected adversely so far in my journey with Mac and obsesses. I just want to be sure you all knew this so that you were being monitored at least once/ month. Blessings Judy

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@judyhodgern

Hi Pam and Irene I just wanted to be sure that you and others know that there is a side effect of arikayce that can affect the kidneys and I had that and my creatinine went up to 1.53 —too high! I had to go off of arikayce. Bad because I thought that it was helping me and that was a good thing that’s about the only thing that’s affected adversely so far in my journey with Mac and obsesses. I just want to be sure you all knew this so that you were being monitored at least once/ month. Blessings Judy

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@judyhodgern Thank you for the reminder. I have a UMASS appointment today and will mention that along with other questions. I do get monthly bloodwork which, so far, is ok. Thank you. Irene

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@judyhodgern

Hi Pam and Irene I just wanted to be sure that you and others know that there is a side effect of arikayce that can affect the kidneys and I had that and my creatinine went up to 1.53 —too high! I had to go off of arikayce. Bad because I thought that it was helping me and that was a good thing that’s about the only thing that’s affected adversely so far in my journey with Mac and obsesses. I just want to be sure you all knew this so that you were being monitored at least once/ month. Blessings Judy

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thank you everyone for your thoughts about night sweats….all the blood work done in the last two weeks has ruled out anything serious (thank goodness!), so I have to assume that this is related to my lungs and perhaps an infection of some sort (though I feel fine). So far the recent sputum samples show nothing but I am waiting on getting results for MAC (which takes weeks). I will pursue the CT scan and/or xray as well. If the MAC has returned ( have now been free of that since 2017) I will have to decide what "route" to take; the Aricayce seems a little tricky concerning liver issues. Thank you so much for your support! Pam

Liked by lorifilipek

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@pamelasc1

thank you everyone for your thoughts about night sweats….all the blood work done in the last two weeks has ruled out anything serious (thank goodness!), so I have to assume that this is related to my lungs and perhaps an infection of some sort (though I feel fine). So far the recent sputum samples show nothing but I am waiting on getting results for MAC (which takes weeks). I will pursue the CT scan and/or xray as well. If the MAC has returned ( have now been free of that since 2017) I will have to decide what "route" to take; the Aricayce seems a little tricky concerning liver issues. Thank you so much for your support! Pam

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Funny, I’ve recently had the night sweat issue that even manifested itself in the daytime also. I didn’t have a thermometer and it took several trips out to buy one 25 miles from home. No temperature, but my GP had me take a Covid test which was negative. I took Premarin for a month…still had the sweats…didn’t alter my nebulizer or inhaler regimen, and as suddenly as it appeared, it just went away.

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@dee65

Funny, I’ve recently had the night sweat issue that even manifested itself in the daytime also. I didn’t have a thermometer and it took several trips out to buy one 25 miles from home. No temperature, but my GP had me take a Covid test which was negative. I took Premarin for a month…still had the sweats…didn’t alter my nebulizer or inhaler regimen, and as suddenly as it appeared, it just went away.

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Praise be to spontaneous remission! Don

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@dee65

Funny, I’ve recently had the night sweat issue that even manifested itself in the daytime also. I didn’t have a thermometer and it took several trips out to buy one 25 miles from home. No temperature, but my GP had me take a Covid test which was negative. I took Premarin for a month…still had the sweats…didn’t alter my nebulizer or inhaler regimen, and as suddenly as it appeared, it just went away.

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I’m so glad for you —-those can Be awful

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@pamelasc1

Hello – I am writing to see if anyone who has had MAC, pseudomonas and bronchiectasis (like myself) for more than 6 years has ever gone through a period of night sweats. And if so, whether they eventually go away. Mine began about 6 weeks ago and they are nightly, waking up with the sheets drenched and my pajamas drenched. Aside from this, I am feeling quite well, with my lungs more or less clear for the time being. My GP feels that it may be a result of the MAC and low immunity, though I am having some blood work done to rule out other issues. Thank you for any information. Pamela

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Hi Pam. Yes, I suffered from night sweats for several yrs when I had active mac and pseudomonas going on. Now that those have cleared out and test negative; the sweats are gone. I have been several years free of night sweats, but I do turn the a/c on most of the time at night because I breathe better and sleep better in chilly air. I remember how miserable it used to be though, so you have my sympathy. Hopefully, yours will pass before you know it.

Liked by anniepie

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@anniepie

Thanks very much Terri. I will keep in touch @windwalker. I see the thoracic specialist / pulmonologist again on 2 November.
At the moment it's great to have a little break from TB drugs! Annie

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Hello @anniepie. Was wondering how your pulmonology appt went?

Liked by Community, anniepie

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The first trial for home use using Nitric Oxide for chronic resistant NTM/MAC starts in Jan 2021, first results expected 6 months later. Keeping my fingers crossed for success with this new therapy. https://www.beyondair.net/news-media/press-releases/detail/127/beyond-air-initiates-patient-screening-for-lungfit-go

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@poodledoc Yay! Thanks so much for posting the article! Fingers crossed here for everyone!! Nan

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@poodledoc

The first trial for home use using Nitric Oxide for chronic resistant NTM/MAC starts in Jan 2021, first results expected 6 months later. Keeping my fingers crossed for success with this new therapy. https://www.beyondair.net/news-media/press-releases/detail/127/beyond-air-initiates-patient-screening-for-lungfit-go

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@poodledoc Made my day! Thank you for that info. Fingers crossed! irene5

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Yes this study is a really big deal, in particular for those of us with colonized m. Abscessus!

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