1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

america | @america | Jun 30, 2018
In reply to @alleycatkate "@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as..." + (show)
@alleycatkate

@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC....just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures...but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

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Have 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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 30, 2018
In reply to @jkiemen "@america You came to the right place. We all understand about the disease and all have..." + (show)
@jkiemen

@america You came to the right place. We all understand about the disease and all have similar but yet different stories and severity of illness. It impacts your physical and emotional health. Some of us are on the Medications, some tolerate and others do not. Tell us more about yourself. How did you discover it, how advanced was it, what meds where you on?. What are you doing for treatment now?

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@unicorn Thank you Christa for being the liason for the Nitrous Oxide Treatment. Lets all hope it becomes available soon.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 30, 2018

@alleycatkate That is a question for@nick52 because she has been using that product for years.

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yayaaz | @yayaaz | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Hi 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!

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Flib | @flib | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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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.

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nick52 | @nick52 | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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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

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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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.

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yayaaz | @yayaaz | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Thank you❤️

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tdrell | @tdrell | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@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

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irene5 Irene Estes | @irene5 | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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I think if you have a card you are ok. My infectious disease doctor insisted I get one because of my weight. And there are so many different kinds and ways to use maijuana! I have the product but haven’t used it. I’m so not a party gal! I think the sticking point would be using it in a state that hadn’t legalized it. The vape pens are very discreet and don’t produce much odor. The CBD oil is great for arthritis! My PCP told me that! Even my pulmonologist said it is ok for me which I think is crazy! I’ll let you know if I ever use it. It costs mega bucks though as it is not covered by Medicare. Irene

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