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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 MAC members,
All posts from @marybob have been removed and the account deleted. The user was making false claims and advertising which contravenes the Terms of Use. https://connect.mayoclinic.org/terms-of-use/
From the moderating team
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2 ReactionsThanks to Colleen and Katherine for removing the preposterous comments from marybob.....Oh that COPD could be cured as claimed! Thanks for protecting us from this hoax ladies ! TerriD
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2 Reactionstdrell, Terri, you know that Colleen is on the ball and always looking out for us .. a great Fairy Godmother! Katherine
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2 Reactions<br><br><br><br><br>Thanks. Big Hug out to you Tessie!<br> <br><br>
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1 ReactionI am new to this forum as of yesterday..I live in Houston and feel I have excellent Doctors...
My quest for answers actually began by accident...Long story short I was in the office of a renowned ENT.doctor with one more problem in a long list...I had very large crater like lesions on my tongue.. This came up suddenly and were very painful... This Doctor told me when he had seen these in his practice they seem to always signal underlying disease... usually an immune disease..He sent me to an immunologist ... She diagnosed me after many extensive blood panels and a CT scan with a immune deficency...CVID.. by this point I had extensive lung damage... I am treated for the immune disiorder with IG infusions... and I do stay free of pneumonia etc...but the lung deterioration continues.. so i was sent to a pulmonary Dr...and she susoected MAC...i have only now had tthe bronchosopy and will have to wait for all the test to come back and cultures....
I am in a city with a very excellent medical center but...I have learned to try to seek out the best care I can find and try to be my own advocate.... Doctors are so specialized now that you could present with a broken arm and no one would notice if it was not their specialty....
I feel fairly well but... my lung function ( I have had two CT scans since first of year) is going so fast that for the last two weeks I have stayed inside my home .. almost bed fast...because of extreme fatigue and no breath..
My primary Doctor has an excellent reputation and I have gone to her for several years...she did send me to the ENT doctor who sent me to the immunologist... thus the chain finally started working if maybe by accident...
<br><br><br><br><br>LOL, I repeat myself for the newcomers. I don't know when this drug came <br>out, but I wish I had known about before this year. It would have saved me a lot <br>of suffering.<br> <br><br>
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1 Reaction<br><br><br><br><br>Hi Carol. I will look up CVID when I get off of this site so that I know <br>what exactly you are dealing with. I too am immune deficient. I come from a <br>family rich with auto-immune diseases. I am curious, if you are steadily losing <br>lung function, has your doctor discussed a game plan if it should get life <br>threateningly low? BTW, so glad that you found us. Hugs -Terri M. <br> <br><br>
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1 ReactionAre only the people who have pulmonary carcinoids getting MAC? My small intestine is affected. I asked my doctor if I needed to watch for MAC and he was totally thrown by my question.
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1 Reaction<br><br><br><br><br>No. MAC is an opportunistic mycobacterium that attacks people with weakened <br>immune systems due to various disease situations. <br> <br><br>
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1 Reaction@caroldelanelittleld, is your name Carole? Let us know .. so much more personal! I just loved your statement " Doctors are so specialized now that you could present with a broken arm and no one would notice if it was not their specialty..." Almost rolled on the floor with laughter because it is so true but so AWFUL!!
I swear .. with your symptoms . if you don't end up with a diagnosis of MAC I am going to be surprised. Have you also had weight loss? That can also be a tip off .. I am small but lost 18% of my body weight before it was all over. Interesting about the "craters/lesions on your tongue" .. I finally had a dentist diagnose mine as "geographic tongue" .. THEN tell me NO .. it could NOT be "geographic tongue" because it was so painful. FINALLY a Mayo Clinic dermatologist told me that while "geographic tongue" is rare .. that 1-2% of people with "geographic tongue" DO have painful lesions. THANKS a LOT! So I just wondered .. has anyone diagnosed your lesions?
Also, my husband has a form of blood cancer, CLL .. and gets monthly IVIG infusions in the winter months when so many "bugs" are going around .. they have helped him stay healthier.
SO GLAD "I have learned to try to seek out the best care I can find and try to be my own advocate" .. so many people have not learned that .. with what you are going through .. that is going to be your VERY BEST weapon .. good for you! I sure hope you keep coming back to our Forum .. we have a really great .. supportive community of people .. we will be here for you every step of the way! Hugs! Katherine
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