(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

@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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@tdrell I just sent a note to Dr. Mark Shoenfisch, University of North Carlonia, Chapel Hill, concerning this procedure. I hoping to hear from him as courteous. He is also the Chief Scientist for a company named VAST Pharm according to LINKEDIN…

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@spencersok

@tdrell I just sent a note to Dr. Mark Shoenfisch, University of North Carlonia, Chapel Hill, concerning this procedure. I hoping to hear from him as courteous. He is also the Chief Scientist for a company named VAST Pharm according to LINKEDIN…

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@spencersok
Interesting
I also emailed the company yesterday. I just sent it to Whom it may concern:
I hope we hear more from them. I'm so glad they are working on this powder form of Nitric Oxide. I watched a video on YouTube yesterday of the CEO of the company.
Shari

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@pfists

@spencersok
Interesting
I also emailed the company yesterday. I just sent it to Whom it may concern:
I hope we hear more from them. I'm so glad they are working on this powder form of Nitric Oxide. I watched a video on YouTube yesterday of the CEO of the company.
Shari

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@spencersok @pfists @mariierod123 @angiejohnson I had my follow-up after the Lung Biopsy. Said it was a Granuloma. Now I have to wait for the Cultures, try a video swallow study and visit to ID. I am going to start making arrangements to see if I can get any improved coverage for National Jewish or for Mayo in Rochester.

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@jkmiemen
Sorry things aren't going better for you. Hopefully you can get your insurance to cover more options "prayers"
Keep us updated
Also update if you find out more on the NO trials.
Shari

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@pfists

@spencersok
Interesting
I also emailed the company yesterday. I just sent it to Whom it may concern:
I hope we hear more from them. I'm so glad they are working on this powder form of Nitric Oxide. I watched a video on YouTube yesterday of the CEO of the company.
Shari

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@pfists Hiya, they are usually pretty good at replying, hope we here from them soon. I think they had a trial at the beginning of the year so would be good to hear about that.

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@spencersok

@tdrell I just sent a note to Dr. Mark Shoenfisch, University of North Carlonia, Chapel Hill, concerning this procedure. I hoping to hear from him as courteous. He is also the Chief Scientist for a company named VAST Pharm according to LINKEDIN…

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@tdrell Keep me posted on what you find out. Would it help if more of us also contact the company?

Liked by pfists, anniepie

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@heathert

@pfists Hiya, they are usually pretty good at replying, hope we here from them soon. I think they had a trial at the beginning of the year so would be good to hear about that.

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@heathert @spencersok @jkiemen @pfists @windwalker Yes I hope this works well and they can bring it to the market as soon as possible — I am praying for this to help us all

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@anniepie

@heathert @spencersok @jkiemen @pfists @windwalker Yes I hope this works well and they can bring it to the market as soon as possible — I am praying for this to help us all

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To Mac/ mai I think it’s something we are all hopeful about

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@windwalker
@heathert
@spencersok
@jkiemen
This is the email I received from the CEO of Vast Therapeutics a few days ago.
Sounds like its going to be in clinical trials next year if all goes well.

Fingers crossed!

Shari

I appreciate you reaching out to us.

As you already understand, we are a preclinical drug company. Our clinical studies will not be for some time (more than a year away).

Further, our clinical study will be for Pseudomonas aeruginosa infections in Cystic Fibrosis patients. So I’m not sure you would qualify.

I wish you the best of luck and we will continue working hard!

John Oakley

Chief Financial Officer

Know Bio LLC / Vast Therapeutics, Inc.

joakley@vasttherapeutics.com

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@pfists

@windwalker
@heathert
@spencersok
@jkiemen
This is the email I received from the CEO of Vast Therapeutics a few days ago.
Sounds like its going to be in clinical trials next year if all goes well.

Fingers crossed!

Shari

I appreciate you reaching out to us.

As you already understand, we are a preclinical drug company. Our clinical studies will not be for some time (more than a year away).

Further, our clinical study will be for Pseudomonas aeruginosa infections in Cystic Fibrosis patients. So I’m not sure you would qualify.

I wish you the best of luck and we will continue working hard!

John Oakley

Chief Financial Officer

Know Bio LLC / Vast Therapeutics, Inc.

joakley@vasttherapeutics.com

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To pfists. Thank you

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@lindam272

@sounder27 I looked into the stem cell therapy at the Lung Institute a few years ago. I talked to my Cystic Fibrosis doc about it and he asked me questions that I wouldn't know to ask. I asked them of the rep I spoke with at the Institute and here is what I found out: The trial that they did was very small so results are inconclusive. The white paper they have has never been published. My doc says that because they are injecting the blood into your arm instead of directly to the lungs, you can't be certain how much of it gets to the lung tissue. In other words, a very expensive procedure with little chance of success. I have bronchiectasis, MAC and CF. Linda

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@sounder27 @lindam272, ans all. BEWARE stem cell therapy. It is a scam. I confered with pulmonology dept ar Mayo. They said that technology is "not there yet. It will be in the future, but it is 'not there yet'." There IS a reason that insurance doesn't cover it. I have read many conversations in the 'Lung Health' group where patients paid between $9,000 – $16,000 out of pocket to get stem cell therapy for their lungs with zero results. Most of the patients that posted this have idiopathic fibrosis and become very desparate. Mayo Clinic in Jacksonville has a new building under construction specifically for lung rejuvenation research & lab. This lab will refurbish donated lungs to make them viable for transplant. The reseach will include reproduction of lung tissue using t-cells. These are only several great things they will be doing in the field of pulmonology.

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I’m know I’m not doing this correctly, but I have a question. My 89 year old aunt was only able to tolerate the “Big 3” for a few days as she was having horrible side effects. She has a cough that won’t go away. She has a nebulizer that doesn’t seem to be working, neither is the inhaler. What can you recommend for the cough? The pulmonologist thinks the “vest” might work. We aren’t sure she’ll qualify for it though.
Thank you and I’ll do my best to navigate this site correctly,
Renee

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@pfists

@windwalker
@heathert
@spencersok
@jkiemen
This is the email I received from the CEO of Vast Therapeutics a few days ago.
Sounds like its going to be in clinical trials next year if all goes well.

Fingers crossed!

Shari

I appreciate you reaching out to us.

As you already understand, we are a preclinical drug company. Our clinical studies will not be for some time (more than a year away).

Further, our clinical study will be for Pseudomonas aeruginosa infections in Cystic Fibrosis patients. So I’m not sure you would qualify.

I wish you the best of luck and we will continue working hard!

John Oakley

Chief Financial Officer

Know Bio LLC / Vast Therapeutics, Inc.

joakley@vasttherapeutics.com

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@pfists @jkiemen @heathert @windwalker Thanks for following up on this Shari. We could have guessed as much from their website — they seem to want to focus mostly on active cystic fibrosis.
Fairly similar numbers of people are diagnosed with NTMs each year compared to the numbers diagnosed with active cystic fibrosis. But those with active cystic fibrosis are diagnosed far younger, often as children. (NTMs are regarded as ONLY an 'old people's disease', although that isn't true — 50% are younger than 65 and some are children).
There's been research around for 15 years that NO can reduce pseudomonas aeruginosa, but Vast has a new and better delivery system to try out.
The Vast Therapeutics study we looked at showed success with NTMs (https://cysticfibrosisnewstoday.com/2018/05/24/vast-therapeutics-bioc51-fares-well-mouse-studies/ or https://www.prnewswire.com/news-releases/vast-therapeutics-formerly-novoclem-announces-results-showing-eradication-of-all-in-vitro-tested-multi-drug-resistant-bacteria-and-a-99-reduction-of-nontuberculous-mycobacteria-ntm-in-animal-model-300652648.html).
Past methods for inhalation of ordinary NO gas didn't work to get rid of NTMs or TB, but this new controlled release system Vast has developed does seem to be effective with NTMs.
It's a shame that people with NTMs haven't got the political clout to lobby drug companies to promptly pursue successful research results for NTMs. I wish there was something we could all do about that!!!
Anyway, there seems to be another study with NO for people with NTMs underway at University of South Carolina in 2018-2019, although it's not clear if they're using the new controlled release systems or not: 'A Proof of Concept Study of Inhaled Nitric Oxide for Adults With Pulmonary Non-Tuberculous Mycobacterial Infection' — https://clinicaltrials.gov/ct2/show/NCT03748992 . (Principal Investigator: Patrick Flume, Medical University of South Carolina). Does anyone know anything about this trial?

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@windwalker

@sounder27 @lindam272, ans all. BEWARE stem cell therapy. It is a scam. I confered with pulmonology dept ar Mayo. They said that technology is "not there yet. It will be in the future, but it is 'not there yet'." There IS a reason that insurance doesn't cover it. I have read many conversations in the 'Lung Health' group where patients paid between $9,000 – $16,000 out of pocket to get stem cell therapy for their lungs with zero results. Most of the patients that posted this have idiopathic fibrosis and become very desparate. Mayo Clinic in Jacksonville has a new building under construction specifically for lung rejuvenation research & lab. This lab will refurbish donated lungs to make them viable for transplant. The reseach will include reproduction of lung tissue using t-cells. These are only several great things they will be doing in the field of pulmonology.

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Hi windwalker and all! This is interesting because IPF reminds me of NTM! I never heard of this disease until I got it! Well in 2002 it was the very first time I heard about IPF. That’s when my late husband of 29 years was diagnosed IPF. We lived in NY at the time and I tried to get him the best doctors in NY. But he did not get a transplant and he died 18 months later in 2004. I hope and pray that this will be available soon and people could get some help. He was only 54.:) life goes on! Rita.

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yayaaz —– I have a lady friend who is with National Jewish in Denver. Almost every month she goes for a bronchoscopy and says it really clears things out. I'm with Mayo's in Rochester and I've never had one but I was just thinking you might want to ask about this for you aunt. I'm not medically qualified to answer anything but I know what she does. She's had this for many years.

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