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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- 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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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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
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1 Reaction@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
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1 Reaction@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/
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2 ReactionsSo, 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.
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3 Reactions@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
@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
@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!!
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
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1 Reaction@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.
@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.
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