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.

boomerexpert | @boomerexpert | Aug 2, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

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Will be happy to do so again (provided a while back...wish there was a way to search just one's own posts but alas...): To purchase the filters & housings for them (2), contact:
Mark Anderson
Janerotech, Inc.
- tell him Terri Benincasa referred you.
Installation package includes:
- Pleated, 0.2 Micron ABSOLUTE, 2.5"x20",
- DOE Silicone Gasket, for Bacteria Removal
- B890-BK34 Filter Housing, Standard, 2.5x20", with 3/4" PORTS
- Bracket, Steel, White , Single, for Standard Housing (2.5")
- 2 SCR-PK-5 Screw Pack for Single 2.5" (Bracket # BR-02-WC)
- 2 WR-3BK Wrench, for Standard 2.5" Housings
My total cost, including installation (need a plumber) was around $600.
I purchase the replacement filters in bulk (package of 6) - they cost around $75/each.
As you can see, this is a rather costly process, particularly for me on a fixed income, but I decided the cost to be well worth the ROI.
Terri

REPLY
irene5 Irene Estes | @irene5 | Aug 2, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

Jump to this post

Agreed.

REPLY
boomerexpert | @boomerexpert | Aug 2, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

Got it...my name is Terri...you'll also find in my response to the filter question!

REPLY
boomerexpert | @boomerexpert | Aug 2, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

Jump to this post

Then find someone else who will change your filters...sorry your hubby doesn't seem to get how important this is to your health; perhaps he doesn't? If he does, and remains unwilling, take charge!

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Aug 3, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

Jump to this post

Hello @boomerexpert, you may notice I removed the phone number and email that you shared from the public view. While we don't discourage you from sharing this valuable information, we reccommend that members share this kind of information via the private message function. This is for the safety of our members and those whose information is being shared for protection against unwanted spammers who may be watching the site.

If anyone would like the contact information Terri shared, I suggest you contact her by private message. You can do so by clicking on @boomerexpert username and then clicking on send private message.

Thank you for sharing this information Terri, and thank you for understanding our concerns about privacy.

REPLY
boomerexpert | @boomerexpert | Aug 3, 2017
In reply to @auntnanny "To the best of my recollection, when I was at Mayo's 2 years ago I gave..." + (show)
@auntnanny

To the best of my recollection, when I was at Mayo's 2 years ago I gave sputum samples on three different days. It seems to me they knew immediately that there was a showing of MAC but decided to not treat it because it was not much. Now, since I've been home and using a more local lab, my primary care physician has usually requested the analysis and I take the sample to the lab. Have done this about 8 times over the last two years....... it has shown MRSA, MSSA, pseudomonas, etc., and there would be a listing of antibiotics recommended for whatever was there. I have hard copies of all. I always ask for that. But, the last four times the report has said negative and therefore there has been no recommended antibiotic. Dr. Moua (Mayo's) has just told me to use clindamycin as that has always worked well. When I've inquired of the lab about MAC they tell me there has been nothing to culture and I've never had a culture report from the local lab. I'm doing pretty well...... but I've read it takes 6-8 weeks to culture for Mac, and therefore, just wonder if they are getting it right. I have questioned why I seem to have a flare of coughing and no bacteria (for four times) ....... then I take antibiotics for a couple of weeks and am clear for about a month. It's just not all understandable to me. but certainly I'm not ill like I was when I got to Mayo's two years ago after five years of horrid coughing and green phlegm and 7 local doctors saying I had asthma (which I knew was not right). Mayo's is 10 hours from here so I'll go back if I become ill again but I've done okay with whatever program I'm on presently. Could change tomorrow....... but that is my story as of now. The coughing used to be so bad I sat up in bed for years to try to sleep at all. I was never able to go to any public function because I would steal the show. So...... one thing I found relieved that cough just for a few hours at night was a hydrocodone. I came upon that by accident. It was given to me for an injury and I found that it suppressed the cough for about 4 hours -- enough that I could get a little bit of sleep. Just passing this on in case there is someone who has not been able to get any rest at all. Worth a try. I didn't take it in the daytime because I certainly didn't want to become addicted but at night, it was the only relief I ever found ----- until I got to Mayo's.

Jump to this post

Info is for a professional people in great need of whole-house filters, requested by other participants. This is not my, or anyone's personal info. Placed on main site so anyone can find it. I've told him I'm doing so and he's fine with it. Hope you'll put it back. Thanks!

REPLY
tdrell | @tdrell | Aug 3, 2017
In reply to @katemn "Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that..." + (show)
@katemn

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the " MAC & Bronchiectasis Mayo Connect". I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

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Dear Katherine...been waiting to comes up with perfect words to send you in response to your farewell as mentor. But none have emerged except to say....this is the best path for you to take....to spend maximum time and energy focusing on the nasty villains attempting to take over your body!!! And in addition you will also continue to be your hubbys advocate.
I join with all the others in sending our deepest appreciation for your amazing caring and guidance . And hope for the best outcome for you and hubby.
Please let us know how you are doing as energy/time permit
Tdrell aka terriD

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 4, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

Hi Terry. At some point age does go against you. The Mayo transplants many people over 70 if they are in good shape other than the disease that is trying to take them out. I have gone to several lung transplant support groups and met people over 70 (late 70's) that had not one, but two diff transplants! Mayo tends to take on patients who have no other hope, whereas; other intitutions will not. I think, that some institutions will not take that on because they want to show higher survival numbers. Mayo used to be number one in the country for highest survival rates with lung trans, but now that their pre-qualifying terms aren't as stringent as other institutions they have dropped to either second or third place. I don't care, they are still number one in my book!

REPLY
jentaylor | @jentaylor | Aug 5, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

I&apos;ve been looking into stem cell therapy... they have a treatment facility, the Lung Institute, in Pittsburgh, which is near me. If memory serves me right, it cost about $7,000 (I could have that wrong though?).
Any thoughts/opinions?
~Jen 🙂

REPLY
lindam272 | @lindam272 | Aug 5, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

Jen, I did some research into this a couple of years ago. They have a clinic in Scottsdale so I could have gone there easily. It was about $7,000 and takes 3 days to harvest the cells and re-inject. They inject the stem cells into the blood stream near your heart, I think - I tossed everything out so am going by faulty memory! The things that were concerning to me and my doctor - 1 - no white paper published - 2 - number of patients studied was less than 100 - 3 - stem cells injected directly into an area seem to have good result but these are not injected directly into the lungs so you are hoping that enough of them make it there to make a difference. I believe that only 15% of the 100 studied felt that there was any improvement. I could have that wrong, but it was a very small number with a very insignificant improvement, if at all. Let me know what you find out. Linda

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