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.

maryjo2sell | @maryjo2sell | Aug 24, 2017

Hi all, have not been on the site in awhile. Have been to Mayo in Florida twice since last checked in. During a bronchoscopy there was evidence of mycobacterium, mine being kansasaii. Also strep and another fungus. Did not see the main bronch doctor there, but was very pleased with the physician I was assigned to. The good thing is that all tests and cat scans are looked at by the head of the department. I was prescribed the nebulizer with saline and aberterol. I am continuing the keflex alternating with doxycycline. I had some problem with the pulmonary function tests so was told to use oxygen as needed. I have found that to be helpful if short of breath from exertion or in extreme humidity and heat. On the recent visit last month, the sputum test did not detect the MAC, so I did not have to do the " cocktail" again. However, budesonide was added to the nebulizer to try to prevent exerberations. There was a bad one in November with coughing up blood, ugly color sputum and feeling unwell. I cannot compliment Mayo enough. Everyone is so kind there. The physician seems to honestly want to help. I loved his comment, " I am going to try to make your lungs last as long as the rest of your body". That seemed like a very good idea to me!
Fondly, Mary Jo in Florida

REPLY
Kay Strand | @kaystrand | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

Terry
I will continue to work on my questions and try to have a list by early September. I'm sure we will get some additional questions from the forum. I'm thinking in addition to Falkinham we should contact the microbiologist at NJ as well. We have his email. I think someone who is a patient at NJ will be more likely to get a response. That could be you or another of the many people on the forum who see doctors at NJ.

Thanks Terry
Kay S

REPLY
terryb1 | @128128terry11t | Aug 25, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

Another person should contact the microbiologist connected with NJ. That person may think of different follow-ups to questions aiding us in having more than one person's take on what additionally to ask when the scientist responds to the initial question. I suspect that the communication will be solely an email one. Terry

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 25, 2017

@maryjo2sell There you are Mary Jo! Welcome back! I always assume that when people take a break from this forum that they probably aren't feeling too well. I am SO GLAD you got to the Mayo Clinic. I love that place. Which doctor did you see there? Congrats on the 'all clear' on the MAC. I am in the middle of an exacerbation myself right now. Am on the 28 day of tobramycin now, so hopefully I will be cleared up in a few weeks. Do you know the name of your fungus? Katherine used to advise us to have hard copies of sputem test results. I ordered mine going back to 2013 from Mayo. I discovered I had a fungus that they did not mention to me called exophalia, it is a black yeast-like fungus. They may not have mentioned because they probably knew that the drugs I was taking would knock that out. It did not appear on any subsequent tests, so I guess that is what happened.
Sounds like the humidity is getting to you like it is me. I am ridiculously short of breath right now. I have had to use my oxygen during the day a couple of times in the last few weeks. I have to sleep with it every night because my numbers drop to below 88 for five minute stretches.Have you done an over-night pulse- ox test to see what is going on when you sleep? I hope you are at least feeling much better. Hugs! - Terri

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 25, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

@128128terry11t Terry, will you please ask him if there are any open forums at Va Tech on bacterial subjects? I am up in Virginia every other month to visit my daughter. I could drive to forum if they have them. Thanks!

REPLY
terryb1 | @128128terry11t | Aug 25, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

Will do. I think a good time to contact him would be a few weeks after the Fall semester has started. It can be quite hectic at the beginning. By that time, we should have our questions ready to go. Terry

REPLY
maryjo2sell | @maryjo2sell | Aug 27, 2017

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the "exophaila". The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a "black fungus" growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

REPLY
10 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 27, 2017
In reply to @maryjo2sell "Hi Terri- Just hard to find time to do everything lately. Seems by the time you..." + (show)
@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the "exophaila". The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a "black fungus" growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

Jump to this post

@maryjo2sell Ha! I just had this same conversation yesterday with a friend of mine. She asked me why I do not paint or make jewelry any more. I told her that I am have a 4 hour window in a day and it ususally includes errands, or housework. I went blow by blow with her how my daily routine goes (mine includes 2 hrs breathing treatment in the a.m. and then another two in the p.m.) That is 4 hrs gone right there. Told her how I hit a wall about 3:30-4:00 every afternoon and have to lay down for an hour and a half to that I can rest up to get through dinner. After dinner, I am exhausted, then watch tv with hubby. She said "wow, I hadn't a clue!" Don't get me wrong; in the 4 hours I have free, I go and do. I go to the gym, ride my bike, walk my dog, or help my friends i.e. helped one pack last week to move. Although admittedly, the humidity has stopped me in my tracks over this summer. My point is, I am not so sickly that I do nothing, but, gosh, it seems like everything takes twice as long as it used to! P.S. having a two story house doesn't help.

REPLY
ginak | @ginak | Aug 30, 2017

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

REPLY
36 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 30, 2017
In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)
@ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

Jump to this post

Hi @ginak,
I noticed when looking at your profile that you're not following the MAC group. That's why you haven't been receiving emails about all the activity happening in the group. You are only following this discussion.

Here's how to follow the group
1. Go to the MAC group homepage https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Click +Follow in the upper right.

Now you'll get MAC related discussions in your daily digest. Browse all the discussions in the MAC group and follow the ones that interest you.

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