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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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Margie my doctor won’t let me leave the office without the flu shot. Because our immune systems are weak she insisted on the more potent one this year and even suggested a second one later in the season. The pneumonia shot is not an every year requirement. I had mine last year. Good luck.
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2 Reactions@america It's so disappointing when your good days turn upside down because you're sick. Easy to feel angry and sometimes hopeless but if you plow ahead good days pop up again. This lousy disease requires a lot of attention and discipline. Took me forever to learn that. Hope you feel better soon.
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2 ReactionsHi America,
I had the same thing happen to me two years ago. I coughed for three months! My daughter-in-law said I would have to accept getting sick if I wanted to be around the grandchildren. This was all before I got diagnosed with MAC. Well, I learned! Last Christmas we were around family and when we first walked in the door one of the young mothers said, “Isn’t it fumny! I just got a call from the pediatrician and my son has strep.” I said d my goodbyes on the spot, and I went out and sat in the car for four hours on Christmas Day so my husband could visit his family that he sees once a year. AND I didn’t get sick! You have to protect yourself. I didn’t know I had MAC then, but I do now and the drugs have helped my immunity. My point is: Take care of yourself. If you know you get sick easily, stay away from sick people. If they don’tunderstand, you do. My husband does too, and he is very supportive. He even brought me wine out to the car on that day! Hang in there!
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4 Reactions@irene5 thank you so much for your quick response, I'm going to contact my GP today in my Pharmacy and find out if I'm ready for my pneumonia shot which I will push for. And for that heavy duty flu shot.
Margie
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1 ReactionMy pleasure! Seriously, we need those shots. There are a couple of different kinds of pneumonia shots. I think I got prevnar 13.
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1 ReactionThanks guys for all the encouragement! I will have to be more careful because this is like forever. My doctor also gave me the flu shot! It’s the first flu shot I ever got because I always refused it. He told me if I got the flu I could die from it so I got!!!!
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2 Reactions@helem Wow Helen! That took nerve to sit in the car for four hours. Did everyone inside think you were being ridiculous? Not that you probably cared what they thought. Back in the day, when I would get together with family at the holidays; they all thought I was a nut-bag for being so cautious to avoid getting sick. Oh well...
@margiebanks the latest recommendation on the acapella was the green one. My dr had recommended it to @alleycatkate. You can ask her how she likes it.
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1 Reaction@america Awe, Rita, I am sorry you got sick again. You were on a good upward trend. Children can be our krytonite. You are not alone. I have a lung infection that came on last week. I was doing fine until I started back on the toby. This go around, it gave me a cough and irritated my lungs to the point of green infection setting in. My head hurts non-stop and I have chills. I stopped the toby and I cannot reach my dr because he is out of town. I hope we both get over this crud fast. Hugs - Terri
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1 ReactionWindwalker, hi Terri, I am so sorry to hear that. So sorry that you got a lung infection. At times I wish our doctor was closer. I hope you get better soon. Hugs to you Rita.