(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

@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

@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.

@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

@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

@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.

@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

@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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Thanks a lot Nick.

@pfists

@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.

Jump to this post

@pfists thanks…any side effects?

@pfists

@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.

Jump to this post

@boomerexpert
I haven't detected any side effects from coliadal silver, I'm on pretty low dose though. But I do a cocktail of herbal tincture with it every day. I haven't had any negative effects from anything.

@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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Hi everyone,
With regards to colloidal silver, I recommend doing your research or as Katherine always said, "Due diligence".

According to Dr. Brent Bauer from Mayo Clinic says "Colloidal silver isn't considered safe or effective for any of the health claims manufacturers make. Silver has no known purpose in the body. Nor is it an essential mineral, as some sellers of silver products claim."
You can read more in this article:
– Colloidal silver: is it safe? https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/colloidal-silver/faq-20058061

When it comes to supplements and complementary medicine, I always refer to NIH's National Center for Complementary and Integrative Medicine to better understand the proven evidence.
– Colloidal Silver https://nccih.nih.gov/health/silver

The first section of the page states: What’s the Bottom Line?
How much do we know about colloidal silver?
There are no high quality studies on the health effects of taking colloidal silver, but we do have good evidence of its dangers.

What do we know about the effectiveness of colloidal silver?
Claims made about the health benefits of taking colloidal silver aren’t backed up by studies.

What do we know about the safety of colloidal silver?
The U.S. Food and Drug Administration (FDA) has said that colloidal silver isn’t safe or effective for treating any disease or condition.

@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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@colleenyoung I was just getting ready to post those same links. I feel like those thinking about using coloidal silver should look at every angle before deciding to use. @pfist, @nick52, @aflib, @boomerexpert.

Hi everyone! I have not written in a while, nor been on to review comments. My name was BEATITNOW, I'm not sure if I'm still a "part" of the group with my name coming up. I have been on the Clarithromycin, Ethambutol, and Rifampin for about 13-14 months now…and I still have at least another year. I am ready to take my sputum sample next week to see if the infection is gone. But, MY QUESTION IS….have any of you felt slightly "weird" sensations through your body in taking the meds? Like sometimes it's like there is a bug on/ under your skin for just a couple seconds and then it goes away. Or, sometimes it is like a slight bit of pins and needles on a very small area. This will go on through out the whole body randomly and just every so often. Has anyone experienced anything similar or have any suggestions? I need to get in touch with my doctor on Monday, but I wasn't sure if this was something to try to stop taking the meds for a period to see if it would resolve. Thanks for any help or suggestions you can give!

@beatitnow…Yes, the weird feelings seem to come with Clarithromycin for me. I also get the bugs crawling under my skin, but I'm not sure they are only associated with meds. For the past 5 years I have been on Clarithromycin more than I have been off.These symptoms have not been dangerous, just irritating I have nerve problems and have gotten relief from acupuncture.

Beat it now, I am on the big 3 3X week. I also get these weird body sensations. Often it is like an electrical shock often causing arms and legs to jump. It also hurts under the skin can’t describe the feeling.

@suzylulu

Beat it now, I am on the big 3 3X week. I also get these weird body sensations. Often it is like an electrical shock often causing arms and legs to jump. It also hurts under the skin can’t describe the feeling.

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@suzylulu, That sounds horrible.

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