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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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Thanks Terry, calling around for interventional radiologist. xo
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2 ReactionsKatherine,
Here's the post by @colapyrus where she talks about interventional radiation and stopping the bleeding http://mayocl.in/2sqO8O6
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2 ReactionsYes, Katherine, my pulmonary doctor can be reached very easily and appointments can be made with him pretty much any time I need them. The last time I detected blood in my sputum, I just emailed him and an appointment was made for me right away to go in and see him. I will be seeing him for check up in September. In the meantime, I'm enjoying the summer and all the fun it brings.
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1 ReactionNJH said that they usually treat MAC if you have over 200 colonies and don't treat if you have less than 50. I guess the numbers in between are on a case by case situation. My first culture done from a bronch washing was not even 'counted'. So the labs that these cultures are done in need to be sophisticated enough to count the colonies. Jan.
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2 ReactionsJen, I know this is easier said than done, but you have to really try to get to a place of peace about all this. Many things in life aren't fair and truly knock us down, but we have the choice to let or not let this disease define us. I was diagnosed when I retired. Not a great retirement gift. I had plans of going back and volunteering at school. I weigh a whopping 77 pounds now - every day is a struggle for me - but every day I am here is a gift! Worrying takes away too much quality time. I recognize how conflicted you are, and although you don't know me I am sending you a healing hug and faith filled energy.
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2 ReactionsHi Jen, yes so scary. When I went to hospital caughing up blood, it took them 4 days to rule out tb (cool private room though). I told them no tb but MAC, but still had to wait for CT scan, then get docs appt. before they would give me meds. I had 3 negative sputums samples for MAC, and finally a positive one. I went home after 4 days, still with blood sputum just waiting for everyone to get it together, and they finally did and put me back on the meds. So to me, this is a disease that does go dormant for a little while, but because of the enlarged damaged airways, we always reinfect. I think the meds are forever, but I take breaks because so hard on system.
My doc at Massachusetts General is pretty good, he put me on exercise and nebulizer, but I have been waiting for the nebulizer for a month, and caughed up blood again, so I put myself back on the pills. I dont know what else to do. I don't caugh up blood when on the meds, and it seems to take about 4 months off when the blood comes again. That has been the pattern for a few years now.
At least we know it is very slow growing. I try to avoid groups of people and don't go to christmas parties, because everyone is sick! It's too easy to get pneumonia with this disease! And then, that's the end game! xo
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3 ReactionsMy doc told me the interventional radiologist threads a small wire? or something through the chest cavity and gets to the bleeding capillary and zaps it or closes it, I guess they have a camera down there also.
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2 ReactionsSounds like a wise idea to me ... just like all your other suggestions. Terry
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2 Reactions@colapyrus, Jan, I'd like to put this in my File Cabinet .. do you have a link to it .. where did you read about the colonies? Thanks! Katherine
@unicorn, I never used to think I needed to avoid people when everybody in the office was coming down with something because I had rarely gotten sick from them. But situation seemed to have changed a bit earlier this year when I caught a cold that started as laryngitis. By the time it got to my lungs I started seeing blood in my sputum. I knew it was because of my bronchiectasis. My pulmonary doctor prescribed 10-day's worth of antibiotics and the blood was small blood clots that lasted a couple of days. I was lucky I didn't get pneumonia. But from now on, I will follow your suit and try to avoid crowds, especially during the cold/flu season. Definitely do not want to get pneumonia.
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