(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@toni68

@nick52 What is clear lungs . toni ann

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I’m interested in this Clear Lung.
Are you on antibiotics and take the Clear Lung?
Thank you for posting this.

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@toni68

@nick52 What is clear lungs . toni ann

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@yayaaz no I have never been on antibiotic for MAC. If you are take  the clear lung 4 hours  and more before or after your antibiotic.  My doctor here in Canada doesn’t recommand it unless you are severely infected. If you read my post of today I have given

you a phone number 1-847-697-0212 Natural Alternative in IL. Sara can guide you on Bronchial Formula.  Good luck! Nick

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@boomerexpert

Hey @soflo take some time to look through the posts here…you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far….I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc…if s/he won't do anything but the big 3, find another doc.

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FOR YOUR INFO THOSE INTERESTED,

For all those who are interested in herbal med for your lungs here is info received from this company. It is similar to Clear lung

Hello Nick, this is Sarah from Natural Alternatives.

Here is a link to another product I was telling you about, Chinese Lung Support. It helps strengthen weak lungs to allow them to heal:
https://www.naturessunshine.com/us/product/lung-support-tcm-concentrate-30-caps/1004/
Lung Support TCM Concentrate (30 Caps)
http://www.naturessunshine.com
Lung Support TCM is a concentrated Chinese herbal formula that supports the lungs and sinuses and offers additional benefits to the circulatory and urinary systems.
Another one to consider is our Respiratory System Pack. It contains Bronchial Formula, Chinese Lung Support, and other products that work together to support the lungs and respiratory function. Regardless of the illness you're working with, this is a very powerful combination:
https://www.naturessunshine.com/us/product/respiratory-system-pack-30-day/5386/
Respiratory System Pack (30 day)
http://www.naturessunshine.com
Try our targeted supplements for respiratory system health. Support lungs, sinuses and bronchials with powerful formulas.
The prices you see are RETAIL. When you decide to purchase, please select "become a member" and you'll get at least 30% off the retail prices!

If you have questions, please feel free to call or e-mail me back
thank you

Sarah
http://www.NaturalAlternatives.biz
847-697-0212

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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Nick, could you tell me how many drops of colloidal silver you used? I've been adding it to the saline solution but just three drops. Thanks,

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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I ran it by my pulmonary doctor and she was all for it. Just said to get the dosage right. The turning you blue is exaggerated, I read, with the quality of silver on the market..

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@pfists

@boomerexpert
I use colloidal silver also for over a year now. I use a low dose matenace dosage but more if I feel a cold coming on. I haven't had any known side effect, I just get it on Amazon. My natural practitioner recommended it. I also feel the best I have felt in a long time and no mycobacteria Abcessus showing up.
I have heard of people nebulizing it but I don't feel comfortable with that. Maybe there should be some testing done on it to see if it's safe and effective the inhaled route.
Shari

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I nebulizing silver, just three drops and no problems so far but I haven't been doing it for long and I think the dosage is probably too little. If anyone can advice me on the dosage, that would be great.

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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@flib lol it is true (google BLUE MAN FROM SILVER)  I saw the man on TV myself. The blue man he was called. I wouldn’t believe it neither but he was drinking some silver preparation and  it drank it  for many many years but not little dose like us. It wasn’t

COLLOIDAL silver but it’s own prep I think.  The first kind I bought was like 10 ppm ( 1 tablespoon a day) the last 250 ppm (1 teaspoon  a day) call 847-697-0212  for better info.   There is good comments

on that Natural store.  They would be able to recommend the dosage. I take the one recommanded on the bottle.   I bought mine at the Vitamine discount store in Clearwater Fl., and the clerk was very knowledgable. I did my research on it before going back to

buy it. Nick

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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Flib I follow the recommendation on the bottle 250 ppm 1 teaspoon a day.

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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Flib I use the one for the nose. When I feel congested. It works really good. My niece who is a doctor use it also. I bought it at the vitamine discount store in Clearwater Fl. Nick

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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@nick52 …wow! Don't know where to start other than to tell you how grateful I am for you taking so much time answering my questions and providing a wealth of information. I have spent much time today reading up on the connection of probiotics and lungs and would have never guessed that there was such a case for using probiotics for lungs… I will be starting daily probiotics and also want to learn to make Kumbachu, the ultimate probiotic drink. Milk Thistle…..Thank you for that too. l know acid reflux needs more attention then I give it and i usually use slippery elm after the fact, but lately it is not working that well. So I am grateful for both suggestions. I think the healthier we can make ourselves the more able our bodies will be able to fight the MAC.

I am aware of the blue effect that overdosing on colloidal silver is capable of giving…argyria. I think you have to take gobs of it for that to happen, make it yourself and make the silver particles too large. I usually do no more than 7-10 days and only when I have infection…like when my dear cat bites me…haha. Still not sure about nebulizing it though.

Sounds like you have a favorite brand of milk thistle? I will look for a dark liquid one.

Thanks for letting me pick your brain. Best wishes for your continued good health and keeping the MAC down.
Kate

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@boomerexpert
I use Sovereign Silver 10 ppm
The bottle says 1 tsp 5 dropers full for daily maintenance. It is suppose to kill bacteria viruses.
With so many antibiotic resistant infections we need to start rediscovering natural antibiotics.
The book Herabal Antibiotics by Stephen Buhner
explains how all bacteria are resisting antibiotics. So now we're to the point with hardly any new antibiotics being discovered and all bacteria are becoming stronger and resisting the antibiotics we now have.

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@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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