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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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@unicorn thanks for the info about nitric oxide.m Dis you know about L-carnitine and L-citruline that helps our body to prduce more nitric oxide in your body. I am using it to stop heart palpitation and it works. Here some info:
'L-ARGININE CARDIO MAX supports cardiovascular and lung health by increasing Nitric Oxide levels and blood flow. L-Arginine Cardio Max is a bestselling Arginine
formula based on Noble Prize-winning research in the 90's, and the discovery of Nitric Oxide, considered by some as the most important advancement in the fight to maintain blood pressure and overall cardio health.
A PROPRIETARY CARDIO SUPPORT BLEND containing 1500mg of heart healthy and performance enhancing ingredients. In addition to 1000mg of L-Arginine we have included
L-Citrulline, which acts as a catalyst extending the body’s production of Nitric Oxide, and a host of other heart healthy ingredients. L-Arginine Cardio Max is for athletes seeking increased strength and endurance,* and anyone seeking to improve heart and
cardiovascular health, increased virility & stamina. *
Last here after you mention it in this chat, i did some research and find out that L-citruline help the production of nitric oxide so now I buy the L-arginine with L- Citruline. Time will tell. They say it helps keep the lung healthy! Thanks to you! Nick
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2 ReactionsHave you heard about colloidal silver? I have used it in the past. It’s good for immunity and you can put it in the nebulizer. I took a teaspoon 3 times a day and I inhaled through the nebulizer also. It’s a good natural way. But you got to get the pure silver.
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1 Reaction@unicorn Thank you Christa for being the liason for the Nitrous Oxide Treatment. Lets all hope it becomes available soon.
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2 Reactions@alleycatkate That is a question for@nick52 because she has been using that product for years.
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1 ReactionHi brigby,
How do you use CBD oil?
My aunt has MAC/BRONCHIECTASIS, and I was wondering if CBD would help her. I thought if the oil was in lotion and rubbed on her chest it would help. Have you ever tried it in a nebulizer?
Thank you!
Hi yayaaz. No, I've not nebulized cbd. I've taken it orally but haven't found it useful after several months. Curious how I got the name Brigby...I use Flib.
CBD oil is CANNABIS Oil ! Be careful with that. I would be scare using it since my friend who was told it was the best remedy there is . Well she is gone to heaven now! Before she left us she said it was the worst mistake of her life. BE CAREFUL DO NOT BELIEVE
ALL THE MONEY MAKER OUT THERE! Have a nice day everyone! Nick
Hi @flib, @yayaaz was referring to another member, named @brigby. All 3 of you are members of the MAC group on Connect.
Click VIEW & REPLY in the email notification and your'll see the messages from the 3 of you and others.
Hope that helps clarify.
Thank you❤️
@nick52 thanks for posting warning about your friend and the CBD aka Cannabis oil, maybe I am being paranoid...but depending on state laws....does one have to worry about the legality of it.?? Especially if doing travel by planes..
tdrell