(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

Hello Melissa,
My pulmonologist has given me a sterile container to use to collect sputum, and then to drop it off at the nearby lab for analysis the same day that I provide the sputum. I’ve only needed to do this once; he usually depends on other tools as to how I am doing. Also, I learned that MAC or it’s other species are extremely difficult to differentiate. I retired from a university recently. Two years ago, a student in the clinical laboratory science program — those are the technicians who analyze our specimens — did her senior research on MAC and its closely related ‘offshoots’ (avium-intracellulare and other close infections). I went to her presentation before the Health Science professors, and learned it takes very specialized equipment and time to differentiate between MAC complex and other diseases. So most pulmonologists diagnose people with MAC until there can be a further differentiation. But I believe the treatment is the same (similar to TB).
Your situation, Melissa, is rather involved, due to the VA limitations and other extenuating issues. Please keep us updated.

Hello Katemn,
Glad you’re learning about keeping your body strong and injury-free. Yep, as we get older we need to find what works for each of us. Strengthening the muscles around our spines so extremely important — for all kinds of balance issues and to keep our backs strong to support our torso. Best wishes!

Paula

REPLY
@Paula_MAC2007

Hello Melissa,
My pulmonologist has given me a sterile container to use to collect sputum, and then to drop it off at the nearby lab for analysis the same day that I provide the sputum. I’ve only needed to do this once; he usually depends on other tools as to how I am doing. Also, I learned that MAC or it’s other species are extremely difficult to differentiate. I retired from a university recently. Two years ago, a student in the clinical laboratory science program — those are the technicians who analyze our specimens — did her senior research on MAC and its closely related ‘offshoots’ (avium-intracellulare and other close infections). I went to her presentation before the Health Science professors, and learned it takes very specialized equipment and time to differentiate between MAC complex and other diseases. So most pulmonologists diagnose people with MAC until there can be a further differentiation. But I believe the treatment is the same (similar to TB).
Your situation, Melissa, is rather involved, due to the VA limitations and other extenuating issues. Please keep us updated.

Hello Katemn,
Glad you’re learning about keeping your body strong and injury-free. Yep, as we get older we need to find what works for each of us. Strengthening the muscles around our spines so extremely important — for all kinds of balance issues and to keep our backs strong to support our torso. Best wishes!

Paula

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Am I the only person whose Pulmonologist has me using a nebulizer with saline solution twice a day? He says it’s important to keep the lungs clean. I have recently discovered that, when I exercise more than 5 minutes, my blood oxygen plummets. I have a diagnosis of MAC (from a surgical lung biopsy) and bronchiectasis.
Thanks!

REPLY
@Paula_MAC2007

Hello Melissa,
My pulmonologist has given me a sterile container to use to collect sputum, and then to drop it off at the nearby lab for analysis the same day that I provide the sputum. I’ve only needed to do this once; he usually depends on other tools as to how I am doing. Also, I learned that MAC or it’s other species are extremely difficult to differentiate. I retired from a university recently. Two years ago, a student in the clinical laboratory science program — those are the technicians who analyze our specimens — did her senior research on MAC and its closely related ‘offshoots’ (avium-intracellulare and other close infections). I went to her presentation before the Health Science professors, and learned it takes very specialized equipment and time to differentiate between MAC complex and other diseases. So most pulmonologists diagnose people with MAC until there can be a further differentiation. But I believe the treatment is the same (similar to TB).
Your situation, Melissa, is rather involved, due to the VA limitations and other extenuating issues. Please keep us updated.

Hello Katemn,
Glad you’re learning about keeping your body strong and injury-free. Yep, as we get older we need to find what works for each of us. Strengthening the muscles around our spines so extremely important — for all kinds of balance issues and to keep our backs strong to support our torso. Best wishes!

Paula

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Paula, really interesting info on the difficulty of differentiating MAC .. I again feel blessed to be going to Mayo Clinic where this is not an issue. But to be fair .. my Minneapolis Pulmonologist sent my sputum culture just to I think a “regular” lab .. came back as MAI/MAC .. then sent me to an Infectious Disease Specialist .. that lead me to finding a MAI/MAC specialist which was Dr. Aksamit at Mayo Clinic. So perhaps being in a larger city helps in getting to a lab that will diagnose MAC first thing?

REPLY

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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@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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Welcome Philomena,
I can only speak for myself .. BUT I personally would wait to see Dr.
Aksamit .. for me he “walks on water”! With your situation I would ONLY
see him. I just went for my latest check up last week and discussed how
“famous and popular” he is now and how difficult it is to get into him. We
agreed that IF I am not having symptoms .. but merely a check up .. I would
see one of his associates: Dr. Jeremy Clain or Dr. Megan. Dulohery.

That said …. I may be speaking out of line .. BUT if I was you I would
call again .. ask for “Wendy” .. she works directly with Dr. Aksamit ..
tell you spoke with Katherine Fink another patient and I spoke so highly of
Dr. Aksamit you do not want to see anyone but him. THEN ask her if she
could put you on a “Cancellation List” .. OR PLEASE keep you in mind if
something comes up. Then make an appointment for ASAP with Dr. Aksamit ..
but MAYBE Wendy MIGHT be able to fit you in if something happens. Tell
them you need a CT scan per your current doctor so that can be set up.

Then get a copy of EVERY record .. test etc to take with you to Mayo so
they have that baseline to determine any changes.

This is just my opinion. But Dr. Aksamit is the absolute guru of our
disease!* Very best of luck .. and welcome to this Forum!*
*Katherine*

REPLY
@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
and PTSD.
More medications would be a great drug load for my body.

So I just live as healthy as possible and have an exray two times a year.

So far I think my disease is in remision And as I am 86 why do the drug
programn that may not work.

When I have chest discomfort I chew on ginger and it stops the discomfort.

86 going on 87

Liked by janovr

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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!!!

Liked by Melissa23, nannette

REPLY
@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

REPLY
@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?

REPLY
@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!!!

Jump to this post

Hello there! Glad you found this Forum .. it is a great source of
information and support!

Personally if I was sitting in your shoes .. I would go back to the same
Doctor who diagnosed you with MIA/MAC in 2012 .. discuss your symptoms .
and request a “SPUTUM CULTURE”. With a sputum culture which takes about
two months .. they will be able to tell if any MAI/MAC cultures grow from
the sputum .. the number of colonies .. the type of colonies .. and then
based on your symptoms plus probably an Xray and/or an MRI your Doctor will
decide a course of action. In my opinion it is like a puzzle a well
qualified MAI/MAC Pulmonologist puts together with all those factors .. to
decide on just what course of action to take. It is complicated and I have
been blessed with an outstanding Pulmonologist at Mayo Clinic who has
walked me though this journey since 2007 .. bless him!

Good luck on YOUR journey. Keep us posted on how things go .. we will be
keeping you in our thoughts!–
*Hugs!*
* Katherine*

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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Thank you!

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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!

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@ehliny

Thank you!

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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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