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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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@flib i have a very stupid question? Do you have pain on top of your feet above the toes? Or under your feet where your palm is? Nick
@nick52 Awe....I am so sorry that you lost your brother. He did well to stay alive for ten yrs after his transplant. It is the most difficult of transplants. What year did he have his transplant? Did he have it done in Canada?
@pfists Ha! I was thinking of breaking out the sterling goblets that were handed down from my grandparents! And start drinking from them.
@alleycatkate Kate, that was an interesting read about the filtering pots. I wonder how much they are? If I ever go on 'Naked and Afraid', that will be my object of choice to bring along. LOL! Seriously, I can imagine they are quite useful in some parts of the world.
@yayaaz Renee, I was on doxycycline for three yrs without any side-effects. I hope your aunt can tolerate it.
I am interested in opinions about my husband beginning to take the big 3. He has severe COPD, Bronchiectasis, a left lower lobe collapsed lung, he is on oxygen, he is an anemic, weight is down to 114, diabetes type 2, which does not cause him any problems and heart disease with one stint. I wonder if he is strong enough to begin the treatment. However, ID doctor ordered the prescriptions and wants him to begin Monday.
@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.
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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