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(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Profile picture for Brenda R.
Brenda R. | @brigby | 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)
Profile picture for america @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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@colleenyoung WOW, Colleen, thank you and bless you for all the wonderful information!

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Brenda R. | @brigby | 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)
Profile picture for america @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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@yayaaz, Hi, this is Brigby, I just rec’d the Hemp Oil I ordered on amazon and I am taking 1-2 dropper full orally 2x daily. So far I don’t notice any changes/improvement with my arthritis/inflammation, or the amount of phlegm/sinus mucus I have.

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auntnanny | @auntnanny | 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)
Profile picture for america @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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brigby…… thank you for your post. Would you please post again after you've taken it a while and let us know. Besides bronchiectasis, I have tremendous arthritis that nothing seems to help

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Profile picture for irene5 Irene Estes
irene5 Irene Estes | @irene5 | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
Profile picture for america @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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Must be why I always err on the side of caution! Thank you Colleen.

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nick52 | @nick52 | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
Profile picture for america @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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@megan I agree with you it is a personal choice.  It cost my friend 2000$ and she saidit was a steel and she live in hell when using it.  My cousin has a prescription for pain and it is a pill prescription for fibromyalgia  and said it work very good for her.

 All I am saying is be careful With CBD. Nick

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Flib | @flib | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
Profile picture for america @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. I had a lot of mucus also. I finally started taking Clear Lung faithfully and it has really helped.Worth a try.

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Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
Profile picture for yayaaz @yayaaz

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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@pamelasc1 Hi Pam. I just found this post of yours today. Please remember to begin your posts with @windwalker or @whomever you are responding to; otherwise, your message just floats around. I found it by accident.

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Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
Profile picture for yayaaz @yayaaz

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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@pamelasc1 As for the levo, I don't know what say about that. You should probably have a good discussion with your dr about that.

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Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @alleycatkate "@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as..." + (show)
Profile picture for alleycatkate @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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@alleycatkate, You may know this already about avoiding gerd. Cut out acid forming foods like tomatoes, eggplants, meat, eggs, alcohol, coffee, cocacola and others others. Don't eat or drink 3 hrs prior to going to sleep
Sleep with at least a 6" elevation. NOTE: long term use of antiacid meds can cause kidney damage. Hope this helps.

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Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @pfists "Regarding coliadial silver My naturalpathic Dr put me on it, so he must believe there is..." + (show)
Profile picture for pfists @pfists

Regarding coliadial silver
My naturalpathic Dr put me on it, so he must believe there is some merit. Mayo clinic doctors have sent him patients they haven't been able to help.
I have read up on its use quite a bit on and know it was used extensively before antibiotics and they still use it for burn patients There won't be extensive testing on it unless big pharma figures out how to make it into a drug for profit.
I don't think it alone has helped me or if it helped me at all. I always took a pretty small amount. I do know there was a problem with silver salts and all acumillating and causing blueish color.
But saying all that I wouldn't be comfortable nebulizing at all until research was done on it. There could be contaminates in the solution or something. I'm pretty careful about what I inhale avoid dust, scents smoke. I know that when bacteria comes in contract with silver from what I have read can't exist and it doesn't become resistant to colidal silver.
But I have an open mind and will keep researching.
Thanks for your concern!
Shari

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@pfists Wasn't it common practice back in the day to put colloidal silver drops in newborn babie's eyes?

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