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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 ...It is not a particularly pleasant taste. I just found 4 heavy sterling cups at a thrift shop....their destiny is ebay. Haha. Not sure about the silver that would be derived from the goblet.
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1 Reaction@pfists ...my thoughts exactly!
@nick52 ...Do you feel that the Dr Ohirra probiotic is far superior then others? I tested Neg. for H Pyloria. I then thought maybe I had a bacterial overgrowth...so eliminated almost all sugar (except a few occasional squares of chocolate haha) No white anything..No rice, potatoes, junk, breads, etc that turns to sugar...also no gluten, baked goods, no meat, eggs, fish, cheese and easy on fruit (sugar). Low oil. I took some probiotics but not continually so maybe the continued probiotics will fix this gerd...i will let you know and I thank you for your concern and suggestions. I am on the clear lung now...started a few weeks ago. Calling all angels. 🙂
@128128terry11t it is the same recipe as pfists gave you. It is the recipe the Dr Wangmo gave to me few years ago! Lemon is optional so is a small piece of cinnamon. I also use ginger and honey tea bags. It does the same thing I feel! It is easy when I
am on the go. You can try both! Nick
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1 Reaction@windwalter my brother had both lung transplanted in 2005 in Montreal Canada (lung transplant hospital). There is none in New Brunswick. He nearly died because he caught a very bad bacteria and the antibiotic wasn’t healing the infections in the lungs. He
had to have another surgery because the bacteria opened up his wound. He was between life and death so we decided together to get on probiotics and he took them for a very long time. Most double transplant have a life expectancy of 5 years and only 10% (i
think) make it to ten years. He was taking good care of himself but the last two years his kidney wasn’t working properly his body was retaining too much water giving him puffiness and swelling. He had a big cocktail (pills) to take. Nick
Hello Girls, I am new to your forum. I am a 56 year old diagnosed with Bronchiectatasis and MAC avium 2 years ago. I also have NTM abscessus colonization in my sinuses (along with a host of other bad dudes!) I see doctors at Stanford and they have things contained pretty well right now by Gentamicin inhalant 2x daily and budesonide inhalant 2x daily, along with compression vest, postural drainage, and nebulizer w/2% saline. I am still able to work full time, enjoy grandbabies, and most weeks, exercise 5 days a week. But I do suffer with exhaustion, nearly constant headaches, and when I get tired, terrible stabbing muscle pains & chills. Seem to need 10-12 hours of sleep a night. Prayers of friends and family keep me going, but I am concerned about what the future holds. I do wonder sometimes if I should stop working to reduce stress and focus all my efforts toward staying well (?) Also wonder if I should explore National Jewish or Mayo? My lung doctor has explained the "Big 3" antibiotic treatment plan and when we would consider starting. I am also wondering which of my symptoms CBD oil might help? Thanks for listening and any response is appreciated. So grateful for this forum where we can lift one another up and encourage others!
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1 Reaction@brigby Hi there, and welcome to Connect. Wow! I had not had anybody on this site that had this mac business in their sinuses too. They probably are, but had not had their sinuses tested. I am impressed with Stanford in that they didn't automatically put you on the 'Big 3' and that they have you on the nebulized saline. That tells me that they are on the ball. I love the Mayo Clinic in Jacksonville, Fl. They def turned my life around. BTW, I love your spirit; that will take you a long way with this battle with this disease. I am so glad that you found this site.
What a hard time. I hope your brother gets some relief. Must be difficult for you too, seeing what he is going through.
@brigby I swear the sinus tract is where it seems to hide out for me. It seems I always have post nasal symptoms
I’ve had sinus trouble all my life. Now they’re trying to keep the m. Abscessus from getting to my lungs. FYI Gentamicin + Budesonide for my sinuses seems to help keep my lungs lungs clear. After years of Neti pot I bought a Navage and I really like it.
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