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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 Ling for the info. That is exactly what my INFECTIOLOGIST SAID TO ME! I have bronchiectasis also and I have a similar condition as you. That is why I take clear lung to eliminate the sputum from my lungs. I had radiation after a breast cancer
level 1 . It is probably where the problem came from. The Dr can't tell for sure. I appreciate your information.
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1 ReactionI am talking about the Clear lung!
@auntnanny Gosh Jan, if it is not one thing, it is another! I am so sorry to hear about the pseudomonas, that seems to come with the MAC/bronchiecstasis territory. I had it last year and was put on nebulized tobramycin and cipro on alternating months. Those two meds got rid of it. I am not familiar with bacterim. Ask for your lab report and make sure it includes the suseptability test. That is the test that shows what antibiotics will and will not work on your infection. That may be why your dr chose that specific antibiotic. I hope you are feeling better soon. Hugs, Terri M.
Nick
If you read about MAC most articles talk about either nodular or cavitary. Cavitary is treated more aggressively. The type is determined by CT scan. Your doctor can tell you.
Thanks
Kay
@unicorn Ahhhhh Christa! So GLAD to hear from you! I am also glad that you are on a breathing and exercise program. What kind of exercise are you doing? I know this battle can get old, but stay the course girlfriend. The fact that the bleeding has stopped seems like a good sign to me. Like you, I get in a bad way too if I get overly exerted. I am hard-headed, but I have finally learned to respect my limitations. (mostly), don't forget, I am hard-headed : ) Please don't be a stranger, and check in from time to time. I truly worry about you when I don't hear from you for awhile.
Hugs, Terri
@pamelasc1 Hi Pam! That is great that your's cleared up in only two weeks.
Thanks, Terri, for your note. I'm on cipro for two weeks. Had it once previously and cipro did the trick -- hoping for the same result this time. thanks for checking in
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1 Reaction@jkiemen, Hi Jo Ann. Yes, antibiotics tend to kill off the good bacteria in our gut. It is recommended that you take your probiotics at least two hours before or after a dose of antibiotics. This subject is on my list of things I plan to learn more about. I drink Kefir milk daily. It is lactose free and full of probiotics. I also eat yogurt often. Taking probiotics should be on all of our minds if we are on a constant regimen of antibiotics.
@pfist, thank you for the warm welcome back. It is good to be back! I am glad you posted this about the pseudomonas. Glad to know that it is quickly cultured and easily treated. Our forum friend, @pamelasc1 also posted that hers got resolved in two weeks. These two posts will help others when they read it. Wish I had seen posts like these when I was diagnosed with it last year. It kind of freaked me out a bit.
@ling123, With that said, Ling, I feel like those choosing not to take antibiotics should at least be nebulizing the 7% saline twice a day. It is not a drug, (our bodies are mostly saline anyway) and it does a lot of good. It's just good lung hygiene. It moistens the plegm so that it comes up and out easier too. Ling, I know that you know this already. I am am replying for others to see it. BTW, I hope you are doing well. - Terri