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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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@alleycatkate, Licorice root is good for cough and clearing lungs. (not gerd) There are measures to take to avoid GERD. Are you familiar with them?
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1 Reactionwindwalker …… I just picked up my culture report which says "Few Mycobacterium avium complex isolated"...… I'm faxing it on to Mayo's but wondering if this will mean I will have to start with heavier meds. Your opinion????
@windwalker @alleycatkate licorice root, or more specifically Deglycyrrhizinated Licorice (DGL) Root (I use Enzymatic Therapy brand and get via Amazon) are designed for stomach relief and wo/raising blood pressure. I've been using it regularly and have experienced a distinct reduction in my throat clearing and mucus production that I now know was coming from my stomach. Hope this helps.
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3 Reactions@heathert Hi, Heather, Thanks for that article. I've signed up for the newsletter and also sent that link to my CF doctor asking if taking the amino acids in supplement form would have any benefit with the tobramycin. Still waiting to hear from my insurance on whether I can get coverage for the treatment. I will let you know what I hear back. Linda
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2 Reactions@boomerexpert ..Thank you!! Will be adding DGL to my never ending list (haha) of things to get for this disease! Appreciate you sharing!
Kate
@boomerexpert - I might give that a shot. I've been taking omeprazole daily for heart burn and would love an alternative. Linda
@windwalker...I have tried alot...HCL, apple cider vinegar, slippery elm (which was the most effective but not quite cutting it anymore), enzymes, very restrictive diet etc...Have not tried Ginger...Any ideas? Think if I cannot get this issue to go naturally I will need to do a rantadine or one of the more innocuos approaches to digestive issues. Just ordered a good probiotic per Nick! I had not realized that GERD could impact the lung! Yikes!
This is very interesting for us who have had pseudomonas. It is more or less amino acids from the looks of it.
Is it available for use now or still is testing stage?
Shari
@windwalker...Hi Terri. I have used colloidal silver now for probably 20 some years. It has been a very effective antibiotic for me taken orally and also used topically. I have cleared horribly infected cat bites with it in the past. I make my own...I've never had an issue with it's safety ...and I am still not blue! My brother is currently nebulizing it for what he feels is an infected root canal that he feels can best be reached with a nebulizer. ??? Not quite sure how colloidal silver could best be implemented for MAC...and not sure about guiniea pigging with the nebulizer. I still have questions and concerns and reading to do. ??
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2 Reactions@beatitnow yes it happens to me i was feeling like having ants under my skin or tingling weird sensation. My Dr told me to take probiotic with my antibiotic to avoid the sensation but the probiotic as to be taken 4 h. Before or after the antibiotics. It
has worked great for me. It is a secondary effects for some people. Nick