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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 ..Thanks for sharing that. Wish you good luck with it and good health. Kate
Thank you so much, Shari.
@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!
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1 Reaction@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
Hi Shari, Oops, probiotic is correct. I doubt any one thing will do the trick. After all these years with mac/bronc I'm just trying to improve the quality of my day. Look up Lost Empire herbs on Amazon and you can read reviews. Terri said she takes the ginseng/royal honey that comes in small vials, ten to a box, I tried it and there is only about a teaspoon or less in the vial but it gives me almost instant energy but without any jolt.
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1 Reaction@alleycatkate i am so sorry to hear about your H-Pilori bacteria (GERD) you have. It is a bacteria so maybe you should consider taking Dr Ohirra probiotic here’s the number to contact the nutritionist specialiste -1-800-605-5032.
You know Gerd is a bacteria and you need good bacteria to fight the bad ones. Clear lungs will also help because it balance mucus level.if you want to cheat lol on chocolat do it in the afternoon not during the evening! Lol i will keep you in my prayer to
find the path to cure that stomach. Talk to your guidance angels to guide you. Our best doctor lol! Have a lovely sunday!
@nick52 Hi Nick...and thanks for your response. I actually was tested for Hpyloria and it was negative. After reading your posts I ordered a strong probiotic on the net and as I am impatient waiting for it to arrive, I purchased another locally. I am up to 30 billion CFUs daily..I did double it but think it may have upset my tummy more. I have tried to get to the bottom of gerd for a few years now in a natural way without pharmaceuticals but after being on this site...when it wakes me in the night time, I now take rantadine. Cannot have that acid coming up and going back down into the lungs. (I had not considered that in the past) I believe both you and Psists suggested the ginger tea. First night it was great...second nite...not as good but I continue to take it. I think I have tried everything...haha...with the exception on continual probiotics...which I will do now for sure. I see the value in them and it will be a part of my regimin which is becoming extensive..haha. Do you think that 45 Billion CFUs is enough or should I double that? The one I ordered has 11 strains...the one I just bought has 7 strains and 40 CFU's. When I read your posts I started researching more on the probiotics and I think the probiotic is smart...and I am hopeful it might clear this stomach and Gerd problem....I will let you know how it progresses. (I am also hopeful that it will have a large impact on the bad bacteria that is in the lung)...Stay strong and healthy...and you have a beautiful Sunday also!!! Thanks again....Kate
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1 Reaction@alleycatkate
These articles are intriguing.
Certainly looks like a FDA pushed colliadal silver under the rug so they could bring out profitable vaccines and antibiotics. There was no money to be made from silver unless there was a way to make it into drug and patent it. It went from safe and effective to useless. Very suspicious.
@alleycatkate I wonder if drinking from silver goblets is considered getting a nanno level? Because you cannot see any particles but you can taste it. I used to hate dinners at my grandparents and drinking from them and tasting metal.
@suzi2017 Hi Suzie. Well, that is not news we like to hear. What next?