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!

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

alleycatkate | @alleycatkate | Jun 22, 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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@pfists Hi Shari...I tried your recipe with the Ginger last night for Gerd. It was very helpful!! Thank YOU! It didn't knock it out 100% but did a darn good job...and it could be because I did not keep a pristine diet yesterday also. (couple squares of dark chocolate) When I hear that crackling and gurgling in my throat at night it is upsetting. I now sleep sitting straight up in bed to keep the gerd down. It will be lovely to go back to old fashioned sleeping. I see from this website blog how very important it is to keep the Reflux from coming up your throat and going possibly down into the lung. Things I never considered in the past.. This website and all that share here is invaluable.

REPLY
pfists | @pfists | Jun 22, 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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@alleycatkate
Oh I'm so glad it helped you!
Ginger has so many benefits too
It boosts your immune system like crazy. Its part of Stephen Buhner protocol to drink this mixture daily with the tinctures for MAC.
It is antibacterial anti inflamitory.
Plus tastes great with some raw honey!!!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 22, 2018

@alleycatkate Kate, are you aware of the measures to take to prevent gurd?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 22, 2018
In reply to @pfists "Regarding coliadial silver My naturalpathic Dr put me on it, so he must believe there is..." + (show)
@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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@pfist, Hi Shari. The use of silver as an antibacterial goes way back historically. Sterling silver plates, drinking goblets, pitchers, and flatware; were used not only to flaunt wealth, but to stave off illness. Compounds leach out of the metal and into food. Plus, the water would get purified by sitting a bit in the silver goblet. (Or so I have read from historians)

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 22, 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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@yayaaz I will say it again; your aunt is very blessed to have a niece like you looking after her best interest.

REPLY
tdrell | @tdrell | Jun 22, 2018
In reply to @auntnanny "windwalker …… I just picked up my culture report which says "Few Mycobacterium avium complex isolated"...…..." + (show)
@auntnanny

windwalker …… I just picked up my culture report which says "Few Mycobacterium avium complex isolated"...… I'm faxing it on to Mayo's but wondering if this will mean I will have to start with heavier meds. Your opinion????

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@auntnanny ...My ID doctor at NJH told me gold standard for treating is 2 positive sputum cultures (certain number of colonies still present after certain length of time) if found on bronchoscope then one is sufficient. Plus CAT evidence of active infection. Tdrell

REPLY
pfists | @pfists | Jun 22, 2018
In reply to @pfists "Regarding coliadial silver My naturalpathic Dr put me on it, so he must believe there is..." + (show)
@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

Jump to this post

@windwalker
Yes that's right this had me thinking if there could be a way to safely treat our water supply through silver filters or something to erradiate the MAC.

REPLY
alleycatkate | @alleycatkate | Jun 22, 2018
In reply to @pfists "Regarding coliadial silver My naturalpathic Dr put me on it, so he must believe there is..." + (show)
@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

Jump to this post

@pfists I talked w/ a woman that lived in San Miguel Allende, Mexico for many years. We started to talk about colloidal silver and she told me that that is how she treated her water there....with silver. Interesting. I do not recall if it was just the drinking water or the whole house. But now that you mention it, I wonder if there are silver filters.... Just googled and here is a silver filter system but does not look like for whole house. https://www.sswm.info/sswm-university-course/module-6-disaster-situations-planning-and-preparedness/further-resources-0/colloidal-silver-filter ...Gonna go research further.

REPLY
pfists | @pfists | Jun 22, 2018
In reply to @pfists "Regarding coliadial silver My naturalpathic Dr put me on it, so he must believe there is..." + (show)
@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

Jump to this post

@alleycatkate
Yes let us know!
When I was on vacation in Cozmel Mecico, the pool there was purified without chlorine. I can't remember what method he said he used but It was pristine clean with no chemicals.

REPLY
nick52 | @nick52 | Jun 22, 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

Jump to this post

@pfists the Tibetan doctor gave this to me for my stomach .  Ginger is a great digestive helper.  Ginger fights inflammation, cleanses the colon, reduces spasms and cramps, and stimulates circulation.  A strong antioxidant and effective antimicrobial agent

for sores and wounds, protects the liver and stomach. Useful for bowel disorders circulatory problems, arthritis, fever, headache, hot flashes, ingestion, morning sickness, motion sickness, muscle pain, nausea and vomiting. (Dr Balch) 

I also use lemon or a little piece of cinnamon! Very good in the morning and very healthy! Nick

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