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.

pfists | @pfists | Apr 23, 2019
In reply to @jkiemen "Hi all.. There was a session on NTM on Sirius XM. Dr Radio It is repeated..." + (show)
@jkiemen

Hi all.. There was a session on NTM on Sirius XM. Dr Radio It is repeated this evening I think at 4 pm Eastern. It is in the first segment. I called in and got ON. Silent Aspiration was mentioned particularly in my case due to the location were most of my disease seems to be located. They do have Clinical Trials AT NYU Langone Medical Center. I did also ask about Nitric Oxide. They said it was very effective in killing Mycobacterium and are hopeful that the trials will come. If you get a chance to listen to the recorded morning session later today. Let me know if you learn anything. I missed the first part but was lucky enough to call in at the end.

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@jkiemen
Not sure how to listen to this is it something I need to sign up for?
Would be interesting especially the nitric oxide part.
Shari

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tdrell | @tdrell | Apr 23, 2019

@jkiemen hope you are continuing to do well after the lung biopsy....not doing anything strenuous at work and taking care of yourself....was it under general anesthetic or conscious sedation? was it thru mouth or side of chest?? How long before results come back??
As far as nitrous oxide as a treatment....there were a few cases that responded well in Israel a few years ago....I recall Dr Daley from NJH told the audience at a NTM patient workshop....the next research was to be in Canada....he seemed sorta non enthusiastic when mentioning it....this was a few years ago though...the information just shared here is more up to date l believe...
tdrell

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2 replies
Jo Ann K | @jkiemen | Apr 24, 2019
In reply to @tdrell "@jkiemen hope you are continuing to do well after the lung biopsy....not doing anything strenuous at..." + (show)
@tdrell

@jkiemen hope you are continuing to do well after the lung biopsy....not doing anything strenuous at work and taking care of yourself....was it under general anesthetic or conscious sedation? was it thru mouth or side of chest?? How long before results come back??
As far as nitrous oxide as a treatment....there were a few cases that responded well in Israel a few years ago....I recall Dr Daley from NJH told the audience at a NTM patient workshop....the next research was to be in Canada....he seemed sorta non enthusiastic when mentioning it....this was a few years ago though...the information just shared here is more up to date l believe...
tdrell

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@tdrell For the Lung Biopsy, I had IV sedation through the chest. I had to lay on my abdomen and they went through my back. I went to work the next day. The Nitric Oxide study in Canada was a 10 pt study. I don't know the result of it. I keep checking the web site and sending them emails for updates on the progress. The company is Ait-Pharm check https://www.centerwatch.com/clinical-trials/listings/159841/non-tuberculous-mycobacterial-pneumonia-inhaled-gaseous-nitric-oxide/

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1 reply
mariierod123 | @mariierod123 | Apr 24, 2019
In reply to @jkiemen "@tdrell For the Lung Biopsy, I had IV sedation through the chest. I had to lay..." + (show)
@jkiemen

@tdrell For the Lung Biopsy, I had IV sedation through the chest. I had to lay on my abdomen and they went through my back. I went to work the next day. The Nitric Oxide study in Canada was a 10 pt study. I don't know the result of it. I keep checking the web site and sending them emails for updates on the progress. The company is Ait-Pharm check https://www.centerwatch.com/clinical-trials/listings/159841/non-tuberculous-mycobacterial-pneumonia-inhaled-gaseous-nitric-oxide/

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Thats what they want to do with me im to scared

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pfists | @pfists | Apr 24, 2019
In reply to @jkiemen "To All. Check out this site for a developing Dry Powder Nitric Oxide from Vast Pharmaceuticals...." + (show)
@jkiemen

To All. Check out this site for a developing Dry Powder Nitric Oxide from Vast Pharmaceuticals. https://www.oindpnews.com/2018/05/dry-powder-nitric-oxide-release-formulation-reduces-bacterial-load-of-ntm-by-99-in-preclinical-study/

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@jkiemen
This looks amazing...do you know if it's still in testing phase or for actual use. I will check into more too.
Shari

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 24, 2019
In reply to @tdrell "@jkiemen hope you are continuing to do well after the lung biopsy....not doing anything strenuous at..." + (show)
@tdrell

@jkiemen hope you are continuing to do well after the lung biopsy....not doing anything strenuous at work and taking care of yourself....was it under general anesthetic or conscious sedation? was it thru mouth or side of chest?? How long before results come back??
As far as nitrous oxide as a treatment....there were a few cases that responded well in Israel a few years ago....I recall Dr Daley from NJH told the audience at a NTM patient workshop....the next research was to be in Canada....he seemed sorta non enthusiastic when mentioning it....this was a few years ago though...the information just shared here is more up to date l believe...
tdrell

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@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I posted the link awhile ago, but will have to look for it again. NIH (National Institute of Health) did studies many years ago on treating mac with nitrous oxide. The study proved it does kill off mac, but the delivery system was not cost effective to use it at that time. One would have to spend four hours a day in a medical facility to receive the treatment. I forgot for how many days one would need to do that. Bottom line was, there was no money to be made. It will be interesting to see how an inhaled version of this will go. For as bad as our disease is, it sure is interesting to me to research it.

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3 replies
pfists | @pfists | Apr 24, 2019
In reply to @windwalker "@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I..." + (show)
@windwalker

@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I posted the link awhile ago, but will have to look for it again. NIH (National Institute of Health) did studies many years ago on treating mac with nitrous oxide. The study proved it does kill off mac, but the delivery system was not cost effective to use it at that time. One would have to spend four hours a day in a medical facility to receive the treatment. I forgot for how many days one would need to do that. Bottom line was, there was no money to be made. It will be interesting to see how an inhaled version of this will go. For as bad as our disease is, it sure is interesting to me to research it.

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@windwalker
@jkiemen
Yes this would be great to have it in a powder delivery that was cost and time effective. It would be an answer to many people's prayers!
I'm still checking on how far along they are with the research.
Shari

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sounder27 | @sounder27 | Apr 24, 2019
In reply to @windwalker "@sounder27 Hi. Click on my photo icon and read about my treatment plan. It included doxycycline..." + (show)
@windwalker

@sounder27 Hi. Click on my photo icon and read about my treatment plan. It included doxycycline and ciprofloxacin. I had a negative sputem test after 6 months on those two. I was clear of mac after 6 months on those. Then, I got MAI a yr later. Then, at 6 month testing, that was negative. Have been negative since 2014 of any mac. I did, however, get pseudomonas in 2016. Was put on inhaled tobramycin. After 30 days on that, it got rid of the pseudomonas. I have been negative for all bugs since 2016. I am on a low dose antibiotic maintenance plan to this day. It is a prophylactic (preventative) measure to treat the bronchiectasis.

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I was encouraged to hear that you are clear. However I have not taken the doxy as one of the side effects is possible loss of color vision or vision altogether and I am an artist and designer and the thought of gambling with my vision is frightening and would cost me my job. Also I had taken just 10 days of Cipro several years ago and got severe diarrhea and could not eat anything without it going right through me. That lasted for a year and a half after the cipro. I had to get tested for c diff. I am reluctant to take those meds for that reason. Has your coughing stopped as well? I have bruised ribs from coughing so hard and am in pain now. Perhaps I should weigh one awful thing against another. I am more than a little discouraged.

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