(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@philomena

Hello, I am new to this site. I was diagnosed with MAI about a year ago after a bronchoscopy to figure out the nodular growths in my lungs. At that time I did not have symptoms but the nodules in my lungs tested positive. My pulmonary Dr. recommended not to start any antibiotic treatment since I was symptom free, but to continue to monitor it with bi-annual CT chest scans. Since my last appointment, I have started to have bronchial symptoms. I'm due for my next CT scan but wanted to get a second opinion. I was excited to hear about Dr. Timothy Aksamit at Mayo so I'm trying to get an appointment with him; however, they said he doesn't have any openings as far out as May (and they don't schedule out any farther). They suggested I see the Nurse Practictioner, who is overseen by Dr. Aksamit. I am more inclined to wait for him to directly be my Dr. since he is the one recommended (and I live 90 minutes away from Mayo). I don't mind driving if I can see him directly. If I can't get in with him, does anyone know of one who specializes in MAI in the Twin Cities? Philomena

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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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Hello 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!

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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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@katemn

Hello 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!

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Yes I agree with your comments<br />

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@katemn

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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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 />

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@katemn

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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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 />

REPLY

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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@Paula_MAC2007

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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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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In reply to @ehliny "Thank you!" + (show)
@ehliny

Thank you!<br />
<br />

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Hello 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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