Connect
(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@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
-
Like -
Helpful -
Hug
2 Reactions@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.
-
Like -
Helpful -
Hug
1 Reaction@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
@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.
-
Like -
Helpful -
Hug
2 Reactions@tdrell Keep me posted on what you find out. Would it help if more of us also contact the company?
-
Like -
Helpful -
Hug
2 Reactions@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
-
Like -
Helpful -
Hug
3 ReactionsTo Mac/ mai I think it’s something we are all hopeful about
-
Like -
Helpful -
Hug
2 Reactions@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
-
Like -
Helpful -
Hug
2 ReactionsTo pfists. Thank you
-
Like -
Helpful -
Hug
1 Reaction@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.