1. < MAC & Bronchiectasis

(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Katherine, Alumni Mentor | @katemn | Nov 6, 2016
In reply to @katemn "Wandering, I SO understand. My dear husband is on chemo .. Stage 4 .. not curable..." + (show)
@katemn

Wandering, I SO understand. My dear husband is on chemo .. Stage 4 .. not curable either .. and obviously I have this MAC .. but as with you two .. we live our lives as fully as possible and has happily as possible! My husband just got back from a "road trip" with our daughter to watch our grandson who is in his college senior year play his final game as quarterback for his football team. They drive 7 hours each way! This ends a nine year journey of road trips for the two of them .. a bittersweet trip for the two of them .. great talks and great fun! All a part of living our lives to the fullest while we can.

We also are each others best support system. As we say: Our kids love us .. our grandkids love us .. but as three in the morning .. It's just you and me Babe! That tells it all! You and I are indeed blessed to have that support system .. MANY do not. Are you aware there is a Mayo Clinic Connect for Breast Cancer? There you may find the same kind of wonderful support we have on our Forum for our MAC people?? Maybe check it out? https://connect.mayoclinic.org/group/breast-cancer/ Sending you a hug! Katherine

Jump to this post

Wandering, good luck to you .. I am sending you lots of positive energy and a hug .. hope things go well for you! Katherie

REPLY
Katherine, Alumni Mentor | @katemn | Nov 6, 2016

Hello All, one of our group asked me my opinion on our disease .. I thought I'd share it with you.

.. it means that after being on antibiotics we can become "stable" .. but we are not really "cured" of MAC/MAI. Unfortunately it can come back. That is why we need to have follow up appointments with our doctors.

If I am understanding Dr. Aksamit correctly .. the mycobacterium CONTINUES to stay in our lungs even after the antibiotic treatment. An example: I went off antibiotics May 2014 after taking 4-5 antibiotics for thirty months. I continued to give sputum cultures and have follow up appointments. I then had this correspondence with Dr. Aksamit on 1/12/16: "The below is the sputum result. MAC is present although smear is NEGATIVE. So, I would re-assess on return as we spoke of and not change our recommendations at this point. I am not convinced that this is an unexpected finding. I continue to believe that we should not consider restart of antibiotics at this point in time.

What this means is that mycobacterium WAS present in my lungs per the sputum sample and report .. BUT NOT colonizing .. so Dr. Aksamit felt I was STILL stable and did not need to go back on antibiotics in January 2016. I now see him again in November 2016 and will see how I am doing.

I always get copies of ALL my sputum cultures. When I was on antibiotics the reports would say:
MYCOBACTERIUM- MANY COLONIES .. OR TWO COLONIES .. OR ONE COLONIES ETC (the 1/12/16 report just said it was present .. but negative)

So I hate to get too technical since I am not a doctor .. I can only speak from my own experience .. but my understanding with our disease is we can become stable but not cured. I hope this clarifies things?. Hugs to all! Katherine

REPLY
1 reply
irene5 Irene Estes | @irene5 | Nov 7, 2016
In reply to @katemn "Hello All, one of our group asked me my opinion on our disease .. I thought..." + (show)
@katemn

Hello All, one of our group asked me my opinion on our disease .. I thought I'd share it with you.

.. it means that after being on antibiotics we can become "stable" .. but we are not really "cured" of MAC/MAI. Unfortunately it can come back. That is why we need to have follow up appointments with our doctors.

If I am understanding Dr. Aksamit correctly .. the mycobacterium CONTINUES to stay in our lungs even after the antibiotic treatment. An example: I went off antibiotics May 2014 after taking 4-5 antibiotics for thirty months. I continued to give sputum cultures and have follow up appointments. I then had this correspondence with Dr. Aksamit on 1/12/16: "The below is the sputum result. MAC is present although smear is NEGATIVE. So, I would re-assess on return as we spoke of and not change our recommendations at this point. I am not convinced that this is an unexpected finding. I continue to believe that we should not consider restart of antibiotics at this point in time.

What this means is that mycobacterium WAS present in my lungs per the sputum sample and report .. BUT NOT colonizing .. so Dr. Aksamit felt I was STILL stable and did not need to go back on antibiotics in January 2016. I now see him again in November 2016 and will see how I am doing.

I always get copies of ALL my sputum cultures. When I was on antibiotics the reports would say:
MYCOBACTERIUM- MANY COLONIES .. OR TWO COLONIES .. OR ONE COLONIES ETC (the 1/12/16 report just said it was present .. but negative)

So I hate to get too technical since I am not a doctor .. I can only speak from my own experience .. but my understanding with our disease is we can become stable but not cured. I hope this clarifies things?. Hugs to all! Katherine

Jump to this post

That is a question I have searched for the answer to, and now you have explained it in an understandable way. Thank you very much. Irene

REPLY
Kathryn S Wilbur | @kwilbur | Nov 7, 2016
In reply to @katemn "Wandering, I SO understand. My dear husband is on chemo .. Stage 4 .. not curable..." + (show)
@katemn

Wandering, I SO understand. My dear husband is on chemo .. Stage 4 .. not curable either .. and obviously I have this MAC .. but as with you two .. we live our lives as fully as possible and has happily as possible! My husband just got back from a "road trip" with our daughter to watch our grandson who is in his college senior year play his final game as quarterback for his football team. They drive 7 hours each way! This ends a nine year journey of road trips for the two of them .. a bittersweet trip for the two of them .. great talks and great fun! All a part of living our lives to the fullest while we can.

We also are each others best support system. As we say: Our kids love us .. our grandkids love us .. but as three in the morning .. It's just you and me Babe! That tells it all! You and I are indeed blessed to have that support system .. MANY do not. Are you aware there is a Mayo Clinic Connect for Breast Cancer? There you may find the same kind of wonderful support we have on our Forum for our MAC people?? Maybe check it out? https://connect.mayoclinic.org/group/breast-cancer/ Sending you a hug! Katherine

Jump to this post

Enjoy Montana! It is my dream state for retirement although I don't know how I could stand the cold. I spent a week in Helena doing research. What a beautiful town. Enjoy life. I say this to myself too. Best, Kathryn

REPLY
Kathryn S Wilbur | @kwilbur | Nov 7, 2016
In reply to @kwilbur "I haven't been contributing as much to this forum as I am in limbo about my..." + (show)
@kwilbur

I haven't been contributing as much to this forum as I am in limbo about my lung condition. I spent half a day in the hospital expecting to have a biopsy of a nodule 9 mm - only to be sent home because the radiologist was afraid of hitting the wall of my lung and my having a collapsed lung. While at the hospital, I had another cscan done and the nodule had gotten small 7 mm , the size it was in June.

Oddly enough, I have stopped coughing up phlegm too - or very little. I was getting sick alot at the beginning of the school year which was treated with antiobiotics. Then I had the flu shot and I really don't know what is going on other than I do know I have bronchiecticus which is a constant.

I am able to keep up with a long school day, but don't do any work once I am home - about 6 p.m. Today I pressure washed my house - well with a light weight Home Depot system and a hose - and was able to keep up a strong pace for six hours. I only pray I stay on this path.

I know I have to remain vigilant but spending every day worrying is a waste of quality life. I was already in a mindset that I had lung cancer which now I truly doubt. It's not worth worrying about possible outcomes until they are a fact. I wish you all good health and stamina as we head into the holiday season. Kathryn

Jump to this post

Thank you so much. Our lives are own - I feel that even more as I live alone. But the sunsets I watch with my cat and dog at the end of the day, the antics I enjoy from my students in class and, at last, I am trying to make more personal connections - not deep ones - but enough to count on a social life beyond being absorbed by worries. Have a great week!

REPLY
boomerexpert | @boomerexpert | Nov 7, 2016
In reply to @david1952 "Dear Kwilbur, Sounds like a tough time lately. Glad things are looking a little better. I..." + (show)
@david1952

Dear Kwilbur,
Sounds like a tough time lately. Glad things are looking a little better. I too worry, but have trouble turning it off. I like the poet's quote, "it's a good thing the future only comes one day at a time!"
david1952

Jump to this post

Having that caliber of love and support is essential for high quality of life...which for me is preferable to quantity. I am very happy that you have it, W - give your wonderful hubby a hug for us!

REPLY
boomerexpert | @boomerexpert | Nov 7, 2016
In reply to @nnassiri "Dear Katherine, and all. My wife had been diagnosed few days ago with MAC. She had..." + (show)
@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

Jump to this post

Would you mind sharing the instructions for cleaning the filters? I've just installed my whole house system with 0.2 micron filters, the type that filter out the mycobacteria (and viruses) - they're expensive, though, so if I can make one last longer, would be a mitzvah! Thanks!

REPLY
wandering | @wandering | Nov 7, 2016
In reply to @nnassiri "Dear Katherine, and all. My wife had been diagnosed few days ago with MAC. She had..." + (show)
@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

Jump to this post

I have copied and pasted the instructions for cleaning the filters below. We have had our unit for 3.5 years, have cleaned the filters per the following and never replaced the filters:

Cleanliness is very important. Do not allow contaminated water to enter the core of the filtering element. This can be prevented by placing your finger over the hole where the water exits the filter.

1. Empty all of the water from your Berkey system.

2. Remove the top container and set it on its side on a solid surface like a table or countertop.

3. Remove the filters by unscrewing the wing nut that secure the element to the container.

4. Hold the filter under running water, with the exit hole pointed up.

5. Using a new 3M scotch Brite pad carefully scrub the Black surface of the filter element for several minutes.

6. If water being used may contain harmful bacteria or other contaminants at this time you should submerge the entire filter into water containing the bleach solution as described above.

7. Set the filters aside and wash your hands.

8. Reassemble the unit.

Even if (or when) you replace the filters, I think over the years you have saved a lot of money versus the other units. PS: It is a mitzvah to find something that works as advertised.

REPLY
wandering | @wandering | Nov 7, 2016
In reply to @david1952 "Dear Kwilbur, Sounds like a tough time lately. Glad things are looking a little better. I..." + (show)
@david1952

Dear Kwilbur,
Sounds like a tough time lately. Glad things are looking a little better. I too worry, but have trouble turning it off. I like the poet's quote, "it's a good thing the future only comes one day at a time!"
david1952

Jump to this post

Thanks. As we say in Texas: "early and often". He's a sweetheart. Don't know how I lucked into that deal but I guess practice makes perfect. He is so much like my father who he didn't even know.

REPLY
boomerexpert | @boomerexpert | Nov 7, 2016
In reply to @kwilbur "I haven't been contributing as much to this forum as I am in limbo about my..." + (show)
@kwilbur

I haven't been contributing as much to this forum as I am in limbo about my lung condition. I spent half a day in the hospital expecting to have a biopsy of a nodule 9 mm - only to be sent home because the radiologist was afraid of hitting the wall of my lung and my having a collapsed lung. While at the hospital, I had another cscan done and the nodule had gotten small 7 mm , the size it was in June.

Oddly enough, I have stopped coughing up phlegm too - or very little. I was getting sick alot at the beginning of the school year which was treated with antiobiotics. Then I had the flu shot and I really don't know what is going on other than I do know I have bronchiecticus which is a constant.

I am able to keep up with a long school day, but don't do any work once I am home - about 6 p.m. Today I pressure washed my house - well with a light weight Home Depot system and a hose - and was able to keep up a strong pace for six hours. I only pray I stay on this path.

I know I have to remain vigilant but spending every day worrying is a waste of quality life. I was already in a mindset that I had lung cancer which now I truly doubt. It's not worth worrying about possible outcomes until they are a fact. I wish you all good health and stamina as we head into the holiday season. Kathryn

Jump to this post

You've got my vote for keeping up such activities!

REPLY
View MoreView Less
Please sign in or register to post a reply.