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.

heathert | @heathert | Nov 2, 2017
In reply to @suenfl "I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery..." + (show)
@suenfl

I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital... same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.

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Thanks @nick52 .Wow that sounds really interesting, I wonder if they do NAET in nz, will check it out.

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maggiew | @maggiew | Nov 2, 2017

Thank you Terri & Nicole (I said Nick-oops!). I had pneumonia in Feb this year. Went to a pulmonologist in June and had sputum tests then. 1 or 2 were positive. I'm confused there, so will review with my pulmonologist. The cultures took over two months to grow! Early September I have the bronchoscopy after review of another CT scan. That culture is still growing but I did have a moraxella infection. Went on bactrim for that. Early October I get pneumonia and am admitted to the hospital. They see the positive MAI, tell me about the bronchiectasis and keep me there for three days. Another item for me was that I had lost 10 pounds in 6 months, and I was not trying, at all. They send me home on a slew of antibiotics, which I have been tolerating well. I was on cefpodoxine for the pneumonia, but am glad to be off of that. I think the original plan was watch & wait, but a second round of pneumonia changed that.

I am feeling much better and will discuss all of this with pulmo and/or IFD. I have an appt with pulmo in 2 weeks. IFD I can call as needed.

I have previously had the swallowing test, and I did not have an issue there, but will revisit this topic.

I've been overwhelmed with this, and may go get second opinions.

Thanks for listening and posting.

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1 reply
nick52 | @nick52 | Nov 4, 2017
In reply to @maggiew "Thank you Terri & Nicole (I said Nick-oops!). I had pneumonia in Feb this year. Went..." + (show)
@maggiew

Thank you Terri & Nicole (I said Nick-oops!). I had pneumonia in Feb this year. Went to a pulmonologist in June and had sputum tests then. 1 or 2 were positive. I'm confused there, so will review with my pulmonologist. The cultures took over two months to grow! Early September I have the bronchoscopy after review of another CT scan. That culture is still growing but I did have a moraxella infection. Went on bactrim for that. Early October I get pneumonia and am admitted to the hospital. They see the positive MAI, tell me about the bronchiectasis and keep me there for three days. Another item for me was that I had lost 10 pounds in 6 months, and I was not trying, at all. They send me home on a slew of antibiotics, which I have been tolerating well. I was on cefpodoxine for the pneumonia, but am glad to be off of that. I think the original plan was watch & wait, but a second round of pneumonia changed that.

I am feeling much better and will discuss all of this with pulmo and/or IFD. I have an appt with pulmo in 2 weeks. IFD I can call as needed.

I have previously had the swallowing test, and I did not have an issue there, but will revisit this topic.

I've been overwhelmed with this, and may go get second opinions.

Thanks for listening and posting.

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Maggiew,

Sorry to hear all that.  My first question is did you get a video deglutition ( only real good test for aspiration according to the radiologist) 

Second question: Do you have all your written report of all your test?  If not I suggest you get them all and read it yourself to be more aware of what is going on. 

Third question: do you have a spare antibiotic to take as soon as you get a cold or feel really congested.  My pneumologist (lung dr) gave me a prescription of AVELOX to take at the first sign of a cold.  He said that it can prevent pneumonia and bacteria

to get in the lung.  There is a cause to all these pneumonia.  

Do you have a ctscan every year as a follow up.?  

It is a very complicated problem.  We need to be on top following our report.

Keep us update after your visit at the doctor.  I am seeing my lung dr Nov. 8, and should get my result of the bronchoscopy.  I will also discuss my problem of aspiration.  I now thicken my liquid mostly distilled water and herb tea. 

Nicole

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maggiew | @maggiew | Nov 5, 2017

I had the video deglutiotion years ago, and did not have an issue. We may need to revisit that. I am on the big three antibiotics, so not sure I need another one. One issue is these darn cultures take about 65 days to grow. They use a DNA marker at first, but those results are not conclusive. So take a test, wait, obsess, and do what else in the interim??? Grrr. Count your blessings and practice gratitude I guess. Now I understand why my pulmonologist schedules my appointments 2-3 months out. This was first 'suspected' in late May, diagnosed in hospital in October. I have started the CT scans this year - 1 in May, a follow up in Aug and another anticipated in Jan. I also had a bronchoscopy in Sept and that specimen is still cooking.

Thanks for the advice and support.

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Barbara Ann | @bschaper2 | Nov 6, 2017

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

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34 replies
boomerexpert | @boomerexpert | Nov 6, 2017

@bschaper2 Not able to respond to question 1, but can to #2...for me, dairy.

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Barbara Ann | @bschaper2 | Nov 6, 2017
In reply to @windwalker "@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I..." + (show)
@windwalker

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

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Hi, Terri -

I call every 3 weeks to May Clinic, they are not taking anyone still (Kate told me to just keep calling). Do you think that I can call and asak to see Dr. Fennelly there directly? It has been 5 months of calling directly there with no openings.

Thanks - Barb

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heathert | @heathert | Nov 6, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

Jump to this post

@bschaper2 for me dairy, bakery goods(maby wheat or baking powder) and sugar seem to cause phlem. I wish they would do some research on this.

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ling123 | @ling123 | Nov 6, 2017

sugar for me definitely. Not sure about other foods. Also have a lot more phlegm when I feel cold.

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nick52 | @nick52 | Nov 6, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

Jump to this post

For all of you who have sensitivity with food like sugar, fried food, dairy product.... they are all mucus forming so if you want to keep eating the food maybe you could consider getting the NAET treatment.  I have done it and I thank god every day who guided

me through that avenue.  It was the best decision i have taken to get those treatment. The mucus is 90% reduced and my friend it help her the same. Think about it 

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