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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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Dear Cheryl @1478 and @nick52
I have sent you both private messages describing how it works. However, I encourage you to continue to share on this forum. By asking and answering questions on the forum you benefit from the group knowledge. The questions you ask are likely questions many here would like to hear the answers to. And there are likely many people sharing on this forum who have answers, experience or tips to offer to your questions.
As @ling123 described, when you reply on the forum, it is advisable to start your message with the person's name or @username if you are addressing a specific person. Naturally the message is still read by everyone and anyone can respond. That's how we share. 🙂
I hope this makes sense.
@boomerexpert. Thanks so much for this information! I will definitely call or write and see if I can participate. Nan
@boomerexpert
Thanks Boomexpert darling! Real nice of you to share with us!
@ling123. Thanks for your help. I am doing that my question was am I able to find my reply? If my reply is too long it says an error may have occured that is my confusion her ling!
@mac5ia Welcome ! It will be a pleasure to support you with that MAC. We all know what it is all about! Keep asking question. Be persistant and keep your courage.
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1 Reaction@nick52 If you are not sure if your reply has been sent or not, you can open the private messages, click on Sent Mail link. You should see all of the messages that you have either initiated or replied. If you don't see it, it was not sent. If the message has had back and forth between you and another person, you want to open the thread to read all the communications to see if a particular reply you are looking for is included or not.
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3 Reactions@boomerexpert, Hello. I tried the link that you posted and it just took me to a generic website saying they do research world wide or rather help researchers. It did not mention any NTM research. I don't know if I just didn't dig around hard enough or what....I have not tried calling him yet. Have you looked into this at all?
@mac5ia, Hi, do you have a first name that you would want to share with us? It makes our conversations more personal. I wanted to tell you about another site called http://www.ntminfo.org they are a research institute dedicated to just NTM research. NTM is the same thing as mac. The letters stand for Non-tuberculosis mycobacterium. They have a registry of people with MAC/NTM. They are asking that all of us that has this disease to please register with them. The reason being is that they need to show real numbers, (proof) of necessity when they ask the government for grants for research, and proof to drug companies that there is a real need to research to come up with better drugs for treatment. MAC has been considered an 'orphan disease' and rare, so it is hard to get funding for it. Like the million woman march, we need to stand up and be counted!!! I have signed up on the registry and encourage everyone who has this to do so.
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1 Reaction@,nannette , Nannette! I was just thinking about you yesterday. Was wo dering how the heck you are doing. I hope that you are not back on this site because you are having lung issues.
@boomerexpert ....thanks for keeping us posted, tdrell