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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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I wish i could remember wheren i saw the post about the private messages. If i find it again, i'll let you know. Blessings
@georgette12, Gina here are a couple of message .. hope it helps! Katherine
Posted by @kanaazpereira, Sat, Jan 7 at 1:29pm CST
Hi @128128terry11t,
Here's how to send private message.
1. Click the member's @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.
Hope this helps.
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Katherine, Mentor
@katemn
Posts: 764
Joined: Nov 21, 2011
Posted by @katemn, Sat, Jan 7 at 2:09pm CST
@kanaazpereira, and @128128terry11t Terry ..
Just wanted to jump in .. personally I feel that private messaging deprives each and every member of the sharing and caring that is involved. That unless a message is TRULY private .. it robs our Mayo Connect of the very purpose it was designed for .. sharing of information .. good and bad .. fearful or delighted. We are all here on a shared journey .. unless we really DO share our cares and woes .. PLUS our victories and joys as they happen .. PLUS the tips and help as we discover them ..we deprive each other.
This is just my personal thoughts. Hope I am not stepping on any toes. Hugs to all. Katherine
Colleen Young, Connect Director and kanaazpereira, Connect Moderator like this
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1 Reaction<br><br><br><br><br>Hello All! I went to my first gym class yesterday. Thought I would start <br>off slow and did the Silver Sneakers class. I was the youngest in there at age <br>58; the others were 65+. I gotta tell you, they kicked my butt! What a fun <br>workout though. Their exercises are designed to work the brain too. I only had <br>to stop twice in the hour and twenty minutes to catch my breath. Look forward to <br>the next one on Monday! -Terri M.<br><br>
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2 Reactions<br><br><br><br><br>At age 58, I got my shingles vaccine last month. They went ahead and gave <br>it to me under the age of 60, because you can never have one after a lung <br>transplant. I am glad I got one because I have two friends under age 60 that got <br>shingles. -Terri M.<br> <br><br>
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1 Reaction<br><br><br><br><br>Would eating yogurt help your thrush?<br> <br><br>
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1 Reaction<br><br><br><br><br>Good! He is really good at explaining things to you and sharing the x-rays, <br>scans, etc. If he doesn't offer, ask, he can pull any of your test results up on <br>his computer and discuss it with you. I hope you like him as much as I do. He <br>has been a life-saver for me. -Terri M.<br> <br><br>
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1 ReactionThank you so very much. I have an appointment with your doctor on March 1.
@donut .. Donna, since this is really a public Forum .. I am responding on our Main MAC Forum so you can take advantage of all our members knowledge, support, hints and help .. hope you don't mind.
Your message:
I have MAC. Do you know if my working in salvage yard would keep me sick with this disease? My brother and i own recycle/salvage yards and i do only the books in the office....there is still fumes and dust...i appreciate your opinion.
Donna, my thought .. first I would recommend you read through the past pages of our Forum .. you will really educate yourself to your MAC disease .. you will feel SO much better by educating yourself .. more in power of your journey ... better able to advocate for yourself AND your medical choices.
BECAUSE NO ONE knows how ANY single one of us got MAC. There are LOTS of theories .. but there is little research for our disease .. so no definitive decision. Truthfully .. just THINK of the MILLIONS of dollars thrown at cancer research .. still not all the answers yet. SO my dear .. do NOT put your energy in asking WHY .. put your energy into educating yourself .. THEN getting the very best medical care possible! THAT is my opinion! Sending you a hug! Katherine
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1 Reaction@maryjo2sell, @windwalker, it is ALWAYS a good idea to ask for a copy of your various reports for your personal file .. at least in the state of Minnesota medical records are only required to be kept for SEVEN YEARS ONLY! https://www.healthit.gov/sites/default/files/appa7-1.pdf
Personally I have been requesting medical records .. doctor notes, medical testing of all kinds for at least the past ten years. I learned the hard way when I had an Internist who I really liked .. did NOT do my 'due diligence' ending in 2001 because I thought I'd be with her forever. She left and I had a HORRIBLE time getting any records from her previous employer. Lesson learned. PLUS by getting copies I learn various things I did NOT catch during the meeting with the doctor. Just my thoughts and opinion. Hugs! Katherine
Donna, which doctor .. name? Katherine