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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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I was diagnosed with MAC and nodules last Aug. I take medications for heart<br />
and PTSD.<br />
More medications would be a great drug load for my body.<br />
<br />
So I just live as healthy as possible and have an exray two times a year.<br />
<br />
So far I think my disease is in remision And as I am 86 why do the drug<br />
programn that may not work.<br />
<br />
When I have chest discomfort I chew on ginger and it stops the discomfort.<br />
<br />
86 going on 87<br />
<br />
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1 ReactionHello johnlk . . glad you found this Forum. If you read all the threads I think you will have enough information to make a good informed decision for your particular situation. For my particular situation I have been in remission since May 2012 after taking 4 antibiotics for 30 months. I trust my Doctor to tell me IF/WHEN I might need to go back on antibiotics in MY PARTICULAR situation.
Each person's body .. situation and life are different. I will be 73 in August and am grateful for the level of health I have now in remission. I think each person just needs to educate themselves .. do their "due diligence" and then make life decisions based on that. No one answer is right for everyone.
Go in peace and be happy!
p.s. For those on this Forum who have known me for a while .. just saw Dr. Aksamit last week .. AND I am STILL in remission .. AND instead of quarterly or bi annual visits .. I can NOW go to one a year!! YEAH!!!!
Of course with the admonishment that if I have increased symptoms etc I am to contact him .. BUT I intend to continue my NordicTrack and yoga .. be happy and live my life!! Again .. YEAH!!!
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2 ReactionsYes I agree with your comments<br />
I was diagnosed with MAI/MAC in 2012 and have never received treatment, since I had no symptoms. I recently had pneumonia and since then have a relentless highly "productive" cough. What symptoms signal active MAI? I'm wondering if this is it?<br />
Hello there! Glad you found this Forum .. it is a great source of<br />
information and support!<br />
<br />
Personally if I was sitting in your shoes .. I would go back to the same<br />
Doctor who diagnosed you with MIA/MAC in 2012 .. discuss your symptoms .<br />
and request a "SPUTUM CULTURE". With a sputum culture which takes about<br />
two months .. they will be able to tell if any MAI/MAC cultures grow from<br />
the sputum .. the number of colonies .. the type of colonies .. and then<br />
based on your symptoms plus probably an Xray and/or an MRI your Doctor will<br />
decide a course of action. In my opinion it is like a puzzle a well<br />
qualified MAI/MAC Pulmonologist puts together with all those factors .. to<br />
decide on just what course of action to take. It is complicated and I have<br />
been blessed with an outstanding Pulmonologist at Mayo Clinic who has<br />
walked me though this journey since 2007 .. bless him!<br />
<br />
Good luck on YOUR journey. Keep us posted on how things go .. we will be<br />
keeping you in our thoughts!--<br />
*Hugs!*<br />
* Katherine*<br />
How fabulous, katem, that you are still in remission!!
Ehliny, I agree with katem, in that your should return to your original doc when you originally diagnosed with MAC/MIA. Best to have a pulmonologist who knows a lot about the disease.
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1 ReactionThank you!<br />
<br />
I'm not able to return to the original physician - he was the surgeon at Sloan Kettering who did a biopsy on a lung nodule. But I am seeing a first rate Pulmonologist at Mt Sinai in NYC who sees a lot of MAI patients. I will ask him about the sputum test. Thanks, guys!<br />
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1 ReactionHello ehliny! If your Pulmonologist sees a lot of MAI patients .. you should be just fine. You are blessed to have found one! MANY have LITTLE exposure/experience with the disease .. you really have to do your "due diligence" as a patient with this disease! We are our own best advocates .. knowledge is power! Stay on this forum .. we learn from each other!
Thank you Paula! I was just ELATED when told I did not have to come back for a YEAR!! Almost did a jig!
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