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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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Thanks so much for the link! I'll bring the subject up again with my pulmonary specialist and see if he'll agree to the switch.
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1 ReactionThere was a study done at NIH that proved it took the full 7% saline to successfully kill mycobacterium avium complex. I have posted it here in the past for folks to print it out to show their doctors. It is a chart that shows what % of saline kills a specific organism. I know Mayo doctors to be among the the very best because I have been going to Mayo for treatment since 2013. The pulmonologist that turned my mac negative since 2014 retired last year. He did not use the typical Big 3 antibiotics, but rather something less toxic but for a longer period of time. It worked, but when I discussed it with the pulmonologist that replaced him, she disagreed with it. So you see, drs can have varying views. I will see if I can locate that chart for you.
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2 ReactionsScroll past the first few paragraphs and you will see the charts. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/
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1 Reactionkathyhg, OMG! That is amazing!!! So happy for you.
kathyhg This tells some of what is in the tea, the licorice root is what really works to open airways. I lived on this tea when I was so sick with mac. I would feel like an elephant was sitting on my chest, and this tea would ease that feeling, plus quite my cough. https://www.traditionalmedicinals.com/articles/tea/a-peek-inside-breathe-easy/
I would like to know also about the saline. Thank you
Where do you buy licorice root?
Hello Beth! Welcome to our group. I do not know about buying straight up pure licorice root, but it is a helpful ingredient in 'Breathe Easy' tea by Traditional Medicine. I buy mine at Kroger's, a local grocery store, in the natural food isle. I requested to the manager to carry it, and he did. You can order it online also. Another product that other members swear by is 'Clear Lungs' can order that online from Amazon, etc. Licorice root has been used for thousands of yrs by Chinese doctors and medicine men. When I was at my sickest, it was the tea that helped with the symptoms; especially the tightness in my chest. Let me know if you try it and what you think.
Hi Sharon. Please look at the top of this page. You should see an magnifying glass icon, click on it and a box will open, type in 7% saline and you will see many conversations about it. Good place to get info! Most members in this group are now using the saline, and seeing improvement in their lungs and feeling better. Many drs are still not aware of it's use, so sometimes you have to mention it to them.
@mrf5629 Beth, I have a bottle of licorice root made by Nature's Way. It says 100 vegan capsules. I take it three weeks on, three weeks off from the recommendation by my functional medicine doctor. He says it's like a natural steroid. I've only taken it for three weeks so far and am in the three week off period. We're hoping it will work to decrease the inflammation in my throat and trachea area. Nan