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
I should have added that I have Bronchiectasis, but have not been diagnosed with MAC.
Jan Skallerud
https://www.amazon.com/dp/B0C3WSXPFG?psc=1&ref=ppx_yo2ov_dt_b_product_details
I just ordered this. Not sure about the Ginseng however. Too stimulating. But have used Mullein before and it helped a lot sometimes and other times not at all.
-
Like -
Helpful -
Hug
1 ReactionI did research on that new drug you are taking and nothing I read was good ..way too many serious side effects ..I think I'd be a bit concerned and supposedly only for people who have done the big three and it didn't work .I really should have tried to go to NJC but unfortunately the expense was too great financially so I'm stuck with four Infectious disease Drs who just compare notes ..
https://herbalteatherapy.com/blogs/news
you can order from here too. Given to me by the raspatory therapist Elizabeth from the youtube channel.
I travel with microwave steam bags, but not all hotels have microwaves and boats don't for safety reasons. On the last two ocean cruises I was able to get a plug in tea pot from the crew to boil water. We are going to France in 2 weeks which will include hotels and a river cruise and I bought a Drizzle Pot to take. It folds down to just several inches and weighs less than 2 #. I tested it out at home and was satisfied. It can hold a Sprint Pari neb and Aerobika at the same time. Have a good trip!
K