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 | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

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@kaystrand I know what you mean, Kay.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

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@tutti XXOXO

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

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@heathert Hi Heather, I am glad to hear some feedback about the inhaled amikacin. I had never known of anybody who had been on it. How long were you on it for?

REPLY
Kay Strand | @kaystrand | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

My pulmonary doc is on the MAC team of 5 doctors at Mayo Rochester, Mn. She is the person that said that stomach acid kills Mycobacterium. I think even on PPIs you have stomach acid, just less. I don't know for sure but without acid in your stomach I don't think you could digest food. Good question for one of the folks on here on PPIs to ask their doctor.

I have not seen any study or info anywhere saying that stomach acid kills MAC. I'm going by my doctor who I trust, but anyone can be wrong. If someone else can put this question their list for their doc, it would be great to get another opinion. We should not have to guess like this!

Does anyone know the microbiologist at NJ? He/she should have an answer to this stomach acid question. I think that the NJ docs are really into reflux as a cause of MAC. I think Mayo believes that as well. I had a 24 hr impedance test at Mayo, but was negative for reflux.

Always more questions than answers. I'm open to anything anyone else has to offer to this question...thanks.

KayS

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@kaystrand Kay, the way it was explained to me was: Gerd is acid reflux and doctors suspect that when we are asleep , we inhale bits of the stomach acid into our lungs causing infection which leads to suseptable lungs to mycobacteriums. Some doctors think we may inhale water that we drank before bedtime that had mac in it. Who the heck knows! I just wish MORE studies were being done.

REPLY
heathert | @heathert | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

Hi @windwalker Terri I was on Amakacin for around 13 months. It is tricky because I went on Amakacin around the same time as I changed from thrice weekly to daily big 3. After I had been on Amakacin for 8 months I was told that I had had 6 months of clear sputums and they stayed that way for a year so I was taken off the amakacin but remained on the big 3( this month). My CT scan this month showed that the nodules had gone and cavities had closed which was great. I feel it was probably the Amakacin as I had been on thrice weekly big 3 for 2yrs without the cavities moving at all and only some noduled had gone. So its either the daily big3 or amakacin that helped, nobody really knows. But a great result .
There was however 2 tiny new nodules(1mm), my doc said they come and go in everybody all the time so not to worry yet.......
watch this space
Heather

REPLY
Lisa Y | @tutti | Aug 22, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

Heather, that's awesome news! So happy for you! So glad to hear that taking these meds worked. Big hug....Lisa

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 22, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@heathert Heather that is great news! Gives us all hope. I am raising my pretend glass of champagne to you, and here's to staying clear!

REPLY
heathert | @heathert | Aug 22, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

Thanks Lisa, it is great to know that these worked, I hope it works for many on here, if anyone needs advice on the Amakacin please just ask me.Heather

REPLY
heathert | @heathert | Aug 22, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@windwalker Thanks Terri, yes its the staying away that is now the issue, fingers crossed, enjoy that champagne, haha

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