(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@boomerexpert

Prayers are great but nothing surpasses research…do your own on available treatments for your situation and their outcomes

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@boomerexpert that is very true, thanks for the reminder.

Liked by Dee

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@tdrell

@jo ann k good luck with biopsy…..and so far no bronchiectasis shows on my CAT scans,…..other stuff which is why l have follow up CAT scans based on Fleischner Society guidelines used by radiologists which really is for checking for Cancer ….over a ten year period no changes in the stuff (nodes and nodules )present….there is inflammation which they feel is from the reflux…l guess because l have never smoked there has been no mention of biopsies and the fact that there has been no enlargements in recent years ….l went to a Dr Claudia Altmann an ID doctor at Grafton Auorora once but went for second opinion at NJH and did not go back to her….again good luck with biopsy
tdrell aka terri

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@kiemen what is the name of the doctor at National Jewish Hospital? I am thinking about taking my wife out there for a checkup. I spoke with a doctor at Walter Reed Bethesda Naval Medical Center about a referral for my wife. It is my understanding they are the best in the Nation in the area of Microbacturieum Avium Complex (MAC)…

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@spencersok

@kiemen what is the name of the doctor at National Jewish Hospital? I am thinking about taking my wife out there for a checkup. I spoke with a doctor at Walter Reed Bethesda Naval Medical Center about a referral for my wife. It is my understanding they are the best in the Nation in the area of Microbacturieum Avium Complex (MAC)…

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I have not been a patient there yet. I know my Pulmonologist tells me they are the best in the nation and my culture specimens are to be sent there. He said if he can't control mine, he will send me there.

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@jasmine321

@angiejohnson My Pulmonologist and myID doctors are suggesting lobectomy also. This is my second MAC infection and bronchiectasis is getting worse. How long did you stay in the hospital? Did they place a chest tube after surgery? I am scared to have the surgery, but I think It makes sense to get it done. If brochiectasis is getting worse, it might affect my entire right lung if I keep getting infections. Don’t know what to do. I always pray that God will lead me to the right decision.

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@angiejohnson I am praying to God also to help us all. Help us to be strong and bear the journey he gave us, help us to heal and not loose faith in him.

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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.

Liked by tdrell, pfists

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@angiejohnson Had my Lung Biopsy yesterday. Now more waiting for results.

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@jkiemen

@angiejohnson Had my Lung Biopsy yesterday. Now more waiting for results.

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@jkiemen Keep me posted! 🤞🏻

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@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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Isnt that for heart diease?

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@jkiemen

@angiejohnson Had my Lung Biopsy yesterday. Now more waiting for results.

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Keep us posted are u in pain from that?

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@mariierod123 It is a little sore. Coughed up a little blood which they told me was to be expected. I am at work today. Nitric Oxide is also used for Pulmonary Hypertension. If we get to try it some time, we should all have good Pulmonary Artery Pressures too.

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@jkiemen

@mariierod123 It is a little sore. Coughed up a little blood which they told me was to be expected. I am at work today. Nitric Oxide is also used for Pulmonary Hypertension. If we get to try it some time, we should all have good Pulmonary Artery Pressures too.

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Wow im gonna ask about that thank u hope u feel better

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@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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@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

@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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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/

Liked by pfists, anniepie

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