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(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!
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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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@nick52 Where did you get the colloidal silver and how long did you take it? Did you have CT scans in the beginning?
This is one of the articles that I found online about light chain amyloidosis: http://cjasn.asnjournals.org/content/1/6/1331.full. It does not mention anything about lungs. And it seems to suggest that this is a rare disease (affecting 5-12 people per million each year). This publication by NIH does not mention lungs either: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228694/. So I doubt most of us in this group is suffering from this disease. For those who are already feeling anxious and panicky, I hope this will not further frighten you for no reason. If you are really concerned about it, mention it to your doctors at your next appointment to see what they think.
Thank you Ling. I'm sticking with diseases I can pronoun.
@flib Ha, ha... I wasn't sure how to pronounce amyloidosis either until I watched a youtube video.
My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.
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1 Reaction@yayaaz that seems awful
Medicare covers all my MAC meds! Maybe your aunt or you as her advocate could call and check on that. Good luck!
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1 ReactionOh good to know that Medicare covers the meds.
Thank you, Renee
Pivotal study expected to commence in the fourth quarter of calendar year 2019
NEW YORK, June 13, 2018 (GLOBE NEWSWIRE) -- AIT Therapeutics, Inc. (OTC:AITB), a clinical-stage medical device and biopharmaceutical company focused on developing inhaled Nitric Oxide (NO) for the treatment of patients with respiratory conditions including serious lung infections and pulmonary hypertension, today announced positive top line results from its Nitric Oxide in Bronchiolitis (NO-BRO) Pilot study. Given these positive results, a pivotal study is expected to commence in the fourth quarter of calendar year 2019.
“Nitric oxide has once again been shown to improve the condition of patients with lung infections when delivered at a high concentration,” said Steven Lisi, Chairman and Chief Executive Officer of AIT Therapeutics. “Our pivotal study in bronchiolitis patients, anticipated to start in the fourth quarter of calendar year 2019 and to complete in the second quarter of calendar year 2020 in the United States, will be performed using our proprietary nitric oxide generator and delivery system. Reducing length of hospital stay in bronchiolitis patients benefits not only the patient and the parents, it reduces cost to the hospital as well.”
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3 ReactionsGreat that the nitric oxide is doing so well but so far away, wish it was this year.
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