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.

auntnanny | @auntnanny | Mar 10, 2019

sounder27 I believe it's a serious bacteria..... I have it in lungs and in sinus cavaties. I recently had sinus surgery because doctors thought perhaps I was getting excessive drainage into lungs. They cultured a sample from sinus and then asked me to use powdered Levaquin in a sinus wash twice daily for two weeks. I did that. I don't know if it got rid of the pro blem but I doubt it. I know that is the main bacteria in my lungs at this time. Apparently it's hard to get rid of. I've had other bacterias throughout the last few years but the pseudomonas has been the hardest for me. Don't know if this helps you at all but I'm sure there are many on here who can share more information.

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2 replies
sounder27 | @sounder27 | Mar 10, 2019
In reply to @auntnanny "sounder27 I believe it's a serious bacteria..... I have it in lungs and in sinus cavaties...." + (show)
@auntnanny

sounder27 I believe it's a serious bacteria..... I have it in lungs and in sinus cavaties. I recently had sinus surgery because doctors thought perhaps I was getting excessive drainage into lungs. They cultured a sample from sinus and then asked me to use powdered Levaquin in a sinus wash twice daily for two weeks. I did that. I don't know if it got rid of the pro blem but I doubt it. I know that is the main bacteria in my lungs at this time. Apparently it's hard to get rid of. I've had other bacterias throughout the last few years but the pseudomonas has been the hardest for me. Don't know if this helps you at all but I'm sure there are many on here who can share more information.

Jump to this post

Thank you. I have excessive post nasal drip and both Mac and bronchiectasis. I have had serious pneumonia in the past for which I was hospitalized for over a week. I constantly cough and choke on mucus but my pulmonary doc has not said anything about pseudomonas infection. I also have sneezing fits. That is why I was wondering about it.

REPLY
2 replies
lainey | @lainey | Mar 10, 2019
In reply to @sounder27 "I’m not sure how to address a question to a specific person here and I sometimes..." + (show)
@sounder27

I’m not sure how to address a question to a specific person here and I sometimes feel like I’m butting in with an unrelated question. But I am wondering if anyone can explain pseudomonas and how it is related to Mac and bronchiectasis.

Jump to this post

The way I understand it -
it is one of the types of bacteria commonly found in patients with MAC and those with Bronchiectasis. It was the last bacteria for me to get rid of - took a long time and it takes a lot of work to keep it gone -which is why lung hygiene/ airway clearance is a MUST ( once every day and twice daily when you feel something coming on) A routine that we must accept as a daily regimen. PLUS what some of the other posters have said- exercise, adequate sleep, good nutrition and positive attitude. I’ve incorporated my bible study in with my Pulmonary therapy / nebulizer treatments and that has been a blessing to me. Best wishes and be stubborn and persistent about taking care of yourself.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 10, 2019
In reply to @lainey "I do agree with all the above, but feel I must add a bit to this..." + (show)
@lainey

I do agree with all the above, but feel I must add a bit to this discussion. I also live in the central Florida area ( not far from Tampa) I have bronchiectasis, asthma, several other health issues but still cleared from MAC since 2016- thankfully. Just for the record - there is absolutely no question that living in a hot, humid environment puts me at a much greater risk for exacerbations. It is a constant struggle to stay healthy here. I go to Colorado and North Georgia as often as is possible. I am careful wherever I am because it is true that you can get MAC anywhere, but it is easier to build up a resistance and maintain a stronger “defense” in better climates than here. I wish it wasn’t like that - all my children live closer to my home in Florida. I am strongly contemplating a move. I am trapped indoors with dehumidifiers, air cleaning devices, double the amount of airway clearance and pulmonary therapy, etc., etc. Just sayin’ ... Don’t rule moving out as a viable consideration

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@catherine123456, and @lainey, I have moved from two locations that I found myself always extremely sick. I left Virginia because I always got pneumonia and mac there. I left Tucson Az because I got mac there too (Az is a known hot-bed for mac.) plus I had difficulty with the altitude. My oxygen levels increased by 6 by moving to sea level. I think Virginia was too humid in the summer and too damp and cold in the winter. After it rains there, the dampness just stays and makes for a lot of molding rotting leaves. In other words, lots of fungals. I now live near the ocean in S.C. Rainwater drains away quickly in the sandy soil so it doesn't feel damp. It does get humid here in the summer, but it is a short duration compared to many states. I have never felt better as far as having clear lungs and negative test results for mac & pseudomonas since I moved here. Moving here was the best thing I could have done for myself. I am still short of breath and energy though, but at least not coughing any longer.

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 10, 2019
In reply to @sounder27 "I’m not sure how to address a question to a specific person here and I sometimes..." + (show)
@sounder27

I’m not sure how to address a question to a specific person here and I sometimes feel like I’m butting in with an unrelated question. But I am wondering if anyone can explain pseudomonas and how it is related to Mac and bronchiectasis.

Jump to this post

@sounder, Do you see how I started this sentence with your @ name? That is how you direct responses to specific people.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 10, 2019
In reply to @auntnanny "sounder27 I believe it's a serious bacteria..... I have it in lungs and in sinus cavaties...." + (show)
@auntnanny

sounder27 I believe it's a serious bacteria..... I have it in lungs and in sinus cavaties. I recently had sinus surgery because doctors thought perhaps I was getting excessive drainage into lungs. They cultured a sample from sinus and then asked me to use powdered Levaquin in a sinus wash twice daily for two weeks. I did that. I don't know if it got rid of the pro blem but I doubt it. I know that is the main bacteria in my lungs at this time. Apparently it's hard to get rid of. I've had other bacterias throughout the last few years but the pseudomonas has been the hardest for me. Don't know if this helps you at all but I'm sure there are many on here who can share more information.

Jump to this post

@auntnanny Jan, it takes ongoing antibiotic therapy and 2x day nebulized saline to fight the pseudo good and gone. You cannot just treat it for a month or two.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 10, 2019
In reply to @america "Hi Sueinmn! Thanks! I do speak with the nurse from time to time. I feel being..." + (show)
@america

Hi Sueinmn! Thanks! I do speak with the nurse from time to time. I feel being closer would help but for now I’ll do what I need to. This disease is lot more complicated than I thought.. this group has helped me in many many ways. But it’s scary having one vocal cord, Sjogrens, RA, restless leg syndrome and so much pain daily. I do get discouraged from time to time. I am thinking about moving because in the Tampa area I think it’s infested with Mac. I would love any thoughts on this. Thanks again Rita.

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@america, and @sueinmn I attended the World NTM conference in D.C. a few years ago. While there, I learned there are some geographic differences for mac. There are definite 'hot-spots' for MAC in this country. Some states have a far greater incidence of it than others. Unfortunately, Florida is one of them, coming in second to Wisconsin. California, Arizona, New Hampshire, & Hawaii. I got mine when I lived in Arizona. I have been mentoring this site for several years now, and I can tell you; the majority of the folks on here with mac live in Wis and Fl. Yes, mac is everywhere, but it is in higher doses in some regions.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 10, 2019
In reply to @boomerexpert "@america do you trust your docs implicitly?" + (show)
@boomerexpert

@america do you trust your docs implicitly?

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@boomerexpert I think the world of @america's doctor, as he is also my doctor. I can tell you this, Mayo Clinic only hires the very best medical personnel. They are usually the cream of the crop.

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2 replies
pfists | @pfists | Mar 10, 2019
In reply to @sounder27 "Thank you. I have excessive post nasal drip and both Mac and bronchiectasis. I have had..." + (show)
@sounder27

Thank you. I have excessive post nasal drip and both Mac and bronchiectasis. I have had serious pneumonia in the past for which I was hospitalized for over a week. I constantly cough and choke on mucus but my pulmonary doc has not said anything about pseudomonas infection. I also have sneezing fits. That is why I was wondering about it.

Jump to this post

@sounder27
Pseudomonas comes with the Bronchectasis territory. It shows up in a sputum usually within three days. Its treated with cipro leviquin or tobramyacin usually. They usually do a susceptibility test to see which antibiotic works best.
Shari

REPLY
1 reply
lainey | @lainey | Mar 10, 2019
In reply to @windwalker "@catherine123456, and @lainey, I have moved from two locations that I found myself always extremely sick...." + (show)
@windwalker

@catherine123456, and @lainey, I have moved from two locations that I found myself always extremely sick. I left Virginia because I always got pneumonia and mac there. I left Tucson Az because I got mac there too (Az is a known hot-bed for mac.) plus I had difficulty with the altitude. My oxygen levels increased by 6 by moving to sea level. I think Virginia was too humid in the summer and too damp and cold in the winter. After it rains there, the dampness just stays and makes for a lot of molding rotting leaves. In other words, lots of fungals. I now live near the ocean in S.C. Rainwater drains away quickly in the sandy soil so it doesn't feel damp. It does get humid here in the summer, but it is a short duration compared to many states. I have never felt better as far as having clear lungs and negative test results for mac & pseudomonas since I moved here. Moving here was the best thing I could have done for myself. I am still short of breath and energy though, but at least not coughing any longer.

Jump to this post

Terri, I admire your tenacity and bravery. I’m trying to work up the courage to make a move - thank you for the encouragement

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