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.

irene5 Irene Estes | @irene5 | May 30, 2019
In reply to @anniepie "Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in..." + (show)
@anniepie

Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in the hospital today. They won't change me to Rifabutin because my damaged liver cannot take it.

They said I will have to just accept what the Rifampin is doing to my thyroid and cholesterol. That's hard because I'm so hypothyroid now I need to sleep almost all day and all night, every day, every month. Like Rip Van Winkle! But I'm not sure how I can accept that for another year or two years. Next week I will see a psychologist for some help with that.

(@america I take my Levothyroxine 8 to 10 hours apart from the Rifampin -- in the morning. I always take the TB meds/Big3 at night, as advised by my pulmonologist. Rifampin doesn't have any big problems for some people with thyroid disease but for others it does. Unfortunately it does with me).

Jump to this post

@anniepie I am so sorry because having MAC makes a person fatigued, and then adding a hypothyroid issue to that must be debilitating for you. The cholesterol issue is a tough one too because of the impact of those meds on your liver. My brother has been in the hospital with endocarditis, the effects of which are reparable with a valve replacement. He is afraid to have the surgery. I told him I was certain if there were a surgery to fix MAC there would be a line out the door for all of us to have that fix! Realizing that bit of “luck” helped him rethink that in a hurry! The MAC road is lengthy and bumpy for many of us. Sending you a gentle hug and prayers.

REPLY
1 reply
Jo Ann K | @jkiemen | May 31, 2019
In reply to @anniepie "Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in..." + (show)
@anniepie

Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in the hospital today. They won't change me to Rifabutin because my damaged liver cannot take it.

They said I will have to just accept what the Rifampin is doing to my thyroid and cholesterol. That's hard because I'm so hypothyroid now I need to sleep almost all day and all night, every day, every month. Like Rip Van Winkle! But I'm not sure how I can accept that for another year or two years. Next week I will see a psychologist for some help with that.

(@america I take my Levothyroxine 8 to 10 hours apart from the Rifampin -- in the morning. I always take the TB meds/Big3 at night, as advised by my pulmonologist. Rifampin doesn't have any big problems for some people with thyroid disease but for others it does. Unfortunately it does with me).

Jump to this post

@anniepie I was on Rifabutin first and had horrible muscle, flu like symptoms and back pain after the first 2 weeks. I was switched to Rifampin. But I did do some reading about doing some kind of desensitation program to obtain tolerance

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america | @america | May 31, 2019

I do remember having flu like symptoms also. Rifampin did make me sick 🙁 MAC makes us sick. Grateful for this group and help from Windwalker (Terri) I am much stronger. I have a lot going on in my body and sometimes I feel like staying in bed all day but when I think of how many of you are going through difficult times... I get going and I know and hope we will find a better way to treat Mac. My prayers for us all to keep going!!! Hugs to all! Rita

REPLY
anniepie | @anniepie | Jun 1, 2019
In reply to @irene5 "@anniepie I am so sorry because having MAC makes a person fatigued, and then adding a..." + (show)
@irene5

@anniepie I am so sorry because having MAC makes a person fatigued, and then adding a hypothyroid issue to that must be debilitating for you. The cholesterol issue is a tough one too because of the impact of those meds on your liver. My brother has been in the hospital with endocarditis, the effects of which are reparable with a valve replacement. He is afraid to have the surgery. I told him I was certain if there were a surgery to fix MAC there would be a line out the door for all of us to have that fix! Realizing that bit of “luck” helped him rethink that in a hurry! The MAC road is lengthy and bumpy for many of us. Sending you a gentle hug and prayers.

Jump to this post

@irene5 Thanks so much Irene

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1 reply
anniepie | @anniepie | Jun 7, 2019
In reply to @anniepie "@irene5 Thanks so much Irene" + (show)
@anniepie

@irene5 Thanks so much Irene

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@windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.

REPLY
3 replies
suzyqueue | @suzyqueue | Jun 7, 2019
In reply to @anniepie "@windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your..." + (show)
@anniepie

@windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.

Jump to this post

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.

REPLY
4 replies
Jo Ann K | @jkiemen | Jun 7, 2019

@suzyqueue @windwalker They are talking about that for me but still waiting for the sensitivity testing. Does anyone know how long that takes?

REPLY
Jo Ann K | @jkiemen | Jun 7, 2019
In reply to @anniepie "@windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your..." + (show)
@anniepie

@windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.

Jump to this post

@anniepie @windwalker I think at 6 months after starting they said things were about the same "maybe slight improvement in one area" but my last one was worse in one area and a bit better in another.

REPLY
1 reply
suzyqueue | @suzyqueue | Jun 7, 2019

Do you mean the susceptibility testing? If so, I'm on 6 weeks of waiting for an updated result.

REPLY
sounder27 | @sounder27 | Jun 7, 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.

Jump to this post

Suzyqueue. Since I am not able to take the big three my pulmonary doc is talking about the amikacin or Arikayce. How is that and is it expensive??? Ate you feeling any side effects??

REPLY
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