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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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@windwalker
I will watch it thanks for sharing!
I had heard of using metals silver or copper in hospital equipment even on the stethoscope because it can transfer bacteria patient to patient.
I saw in an ad the other day a copper prong some company was selling to insert in you nose that is suppose to ward off colds.
I take a zinc suppliment that has copper balanced in it so perhaps that helps ward off MAC.
I believe your on to something about the copper pipes. Keep digging for us please!
Shari
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1 Reactionwow...thanks @windwalker!!
Yes please send this to him. Let us know what he says
@windwalker ...Terri..that is very interesting. And also interesting your thought about copper pipes. I would be interested in his response. Also would love to see what he would suggest as a means of transport of the copper into the lung to kill MAC. I see that there is colloidal copper...I never knew this. Will check out the program. Thanks.
Kate
@flib...I am still digging to find info on nebulizing silver...One thing I came across was to not mix saline with colloidal silver. Salt will combine with some of the silver ions to make silver chloride, which is less effective against bacteria (purportedly hundreds of times less effective than ionic silver), and is mildly toxic. Maybe a few drops in distilled water might be a thought? There is so much conflicting info on alternative meds...but might be worth checking this out.
Kate
@windwalker ...thanks for the info on the show. I will certainly watch it!
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1 Reaction@cila Hi. I was just re-reading your posts to get a recap on your journey with us. I too have had the sensation of pain when I swallow and that the food is just sitting there in the bottom of my esophagus. I had my esophagus widened during an endoscopic procedure. I was told that I had narrowing in that area, and I would likely need it in another 5 yrs. It is five yrs later now, and I do feel like I need it done again. It is a piece of cake. They put you in a twilight anestisia (sp) and do a balloon thingy like when they do angioplasty on heart arteries.
What causes the swallowing problems? Is it advanced COPD or MAC? My husband is in the hospital with pneumonia and yesterday they did a swallowing test because he is also having some problems.
I have to "have my throat stretched" once or twice a year. It's the "balloony" thing. Not painful at all, nice drugs and takes about 20 minutes. I have what is called a "web" in my throat. It is over grown scar tissue caused, I believe, a few years ago by a pill I was unable to swallow and stuck in my throat until it dissolved enough to get down. I am fortunate to have a good doctor at University Hospitals here in Cleveland who has done the procedure many time. It does improve swallowing. My doctor said it is important to have someone very experienced with the procedure or s/he can "blow your throat out."
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1 ReactionI think GERD and bronchiectasis are big contributors. My husband had his “gullet” stretched which has helped his swallowing/choking issues.