(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

@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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@nick52 Could you please elaborate on how much you use and how you prepare the ginger. Please make it a recipe for "how to prepare ginger for dummies"! Thank you.

@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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Hello – just was following the thread of various antibiotics being taken by all of you… ( I have had MAC, pseudemonas, and have bronciectasis) I recovered about 3 weeks ago from a very bad case of pneumonia which had me flat out for 5 days. As recommended by my lung doctor I took 5 days of Levoflaxin and that always seems to pull me back to health. But now again I feel something is going on in my lungs (pain when breathing) and thought I should take the Levo again. But I also noticed that in the last 3 weeks, I have suddenly become very breathless when just going up and down the stairs. I was reading about the side affects of Levo and it mentions is can cause pulmonary fibrosis or IPF… rather scary as that is fatal. And I have taken the Levo, on average, twice a year for the last 3 years when I get pneumonia. Has anyone with mac gotten out of breath for periods of time, then gotten better? Has anyone taken Levoflaxin and had side affects? If the Levo is causing my breathlessness, clearly I feel I should not take it. I have a CT scheduled in two weeks. Pam

@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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@128128terry11t
I can tell the receipe for ginger tea that I make I got out of the book "Herbal Antibiotics"
And maybe Nick can chime in with hers:

GINGER TEA RECIPE
Take a piece of ginger the size of your thumb (you can peal for more exposure but don't need to) slice into 1/4 inch pieces. Bring a small pot of water to a boil "preferable a teapot"
Turn off add the ginger and steep covered 20 minutes or longer the longer it sets the stronger it gets. The cover holds in the essential oils.
Then add raw honey to taste the raw honey has so many benifits for your health also.
If your have lemon squeeze into mixture for even more health benefits.
Drink & enjoy!
Shari

@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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@windwalker @pfists @flib ..Yes, it makes me feel fortunate not to live in a third world country. We can all count our lucky stars for that! Also makes me think colloidal silver should possibly be considered in a maintenance program. I have come across a few articles that are startling. The first refers to the use of Silver and MAC and the second is about Silver and TB.. both very interesting and I believe warrant attention. My 20 some years of using colloidal silver has found no bad side effects or any problems…I am more comfortable with it then I would be taking aspirin…I only question if it eradicates good bacteria but pfists and I are looking further into that … and that could easily be resolved with a good probiotic. I make my own colloidal silver but it is not the nano particle colloidal silver that I understand is superior in that the particles of silver are smaller and more readily absorbed into the system. My brother makes the nano particles and believes it to be superior. It does seem that possibly getting it directly to the lung and the MAC could be the solution and I did read that a few drops a few times a week in a nebulizer would be a regimen….I think that is what @flib is doing. @flib If you can add to this it would be great. I know that is a little scarier then just ingesting it but maybe more direct?? Anyway…for anyone interested, here is an overview and an articled specifically about MAC/TB…. @windwalker …please let me know if this is too over the top for this discussion group. I am looking at all avenues but I know many are uncomfortable with things outside of typical solutions/medicine. Plus it is hard to verify a lot of this info and some must be taken on blind faith. I know that silver for me has killed very bad bacterias…(cat bites after I they have become grossly infected.) It has Staved off infection in my body over the years and is my go-to antibiotic.
https://healthwyze.org/reports/633-making-and-using-genuine-colloidal-silver
https://blueridgesilver.com/blogs/news/116152389-tuberculosis-cases-increase-colloidal-silver-to-the-rescue
https://thesilveredge.com/more-clinical-evidence-colloidal-silver-kills-tuberculosis-pathogen/

Liked by pfists, kristiemlove

@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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So, I've been doing the few drops in the saline solution for about a month…still here. I am not a candidate for any of the antibiotics prescribed for mac. I cannot say if this is a helpful thing to do. Nebulizing the saline solution has definitely helped me. If I can clear my lungs I feel less weak. Breathing does make one feel more jolly. I do this twice a day. I have a hand held nebulizer (about $25 on Amazon) and I watch the news while I use it. It does cause me to cough,, sometimes quiet hard,, but that's the point. I take an antibiotic faithfully twice a day and I am now also into Lost Empire herbs to help me with energy level. Wish I could be more helpful but I promise to let you know if anything goes awry or improves.

@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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@flib
Do you mean you take a "probiotics" twice a day?
Please do keep us updated on your response to the silver Hopfully it does the trick!
What are in the list empire herbs you take?
Best of wishes for you!
Shari

@alleycatkate

@windwalker …bless your heart for all the work you do to help us cope and get better. I cannot tell you how uplifting your post was that said using a saline solution and nebulizer makes a very hostile environment for MAC. I feel as though i regained my sanity reading that! Looking forward to your FB page!!

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@suzie2017 what were the criteria the Dr used to determine he should start on big 3?? what about sputum specimens…what did they show?? what did chest CAT scan show? tdrell

@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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@gaelawree Hi there! I hope that today finds you doing as well as you were doing the day you posted this. I suppose you will be starting the Will you please check back and let us know how you are doing with it? I love your positive attitude!!

@alleycatkate

@windwalker …bless your heart for all the work you do to help us cope and get better. I cannot tell you how uplifting your post was that said using a saline solution and nebulizer makes a very hostile environment for MAC. I feel as though i regained my sanity reading that! Looking forward to your FB page!!

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MAC was confirmed with two sputum cultures which were sent to Colorado and a bronchochial washing from being bronchoscope. The washings were also sent to CO. All confirmed MAC

Liked by tdrell

@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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@windwalker Hi Terri, yes I am doing well, thank you for asking. I have started the 1st & 2nd antibiotics & starting the 3rd on Monday. So far it’s going real well. I’m tolerating the antibiotics. I hope I do with the 3rd one too.
I get notifications from the group everyday & usually read them all. There is a lot of info. When I have Info to share I will post. Pretty much staying about the same right now.

@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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@nick52 I will be going off the anitbiotics in next 6 months so will up my probiotics then and hope they kill the bad bacteria like the antibiotics do.

@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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@flib ..Thanks for sharing that. Wish you good luck with it and good health. Kate

@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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Thank you so much, Shari.

@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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@windwalker I agree with you Terri the small amount we take in Clear Lungs and Breath ease is not dangerous at all if taken in moderation.  Those who have a high blood pressure may have to try it to see if it raised there blood pressure.  I have used the DGL

licorice who is the one recommended. I use breath ease tea also and it is good to clear the airways and lungs. I was told to take DGL licorice if taken on a long period and apparently that deglycyrrhizinated

licorice (DGL)  is safe! 

@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 this is great!  Let us know how it works for you?  I buy mine at Nature’s food Patch on the Missouri (Clearwater Fl). I think I’ve paid 26$ or $28$ for 60 capsules.  I think you live in Florida right? Nick

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