Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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!
KateMN
suzyqueue
@suzyqueue
@suzyqueue
Posts: 36
Joined: Oct 19, 2018
@anniepie @windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.
I was diagnosed in January 2018. Still to this day – no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.
Liked by Terri Martin., Volunteer Mentor, anniepie
Jo Ann K
@jkiemen
@jkiemen
Posts: 429
Joined: Jun 23, 2017
@suzyqueue @windwalker They are talking about that for me but still waiting for the sensitivity testing. Does anyone know how long that takes?
Liked by anniepie
Jo Ann K
@jkiemen
@jkiemen
Posts: 429
Joined: Jun 23, 2017
@anniepie @windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.
@anniepie @windwalker I think at 6 months after starting they said things were about the same "maybe slight improvement in one area" but my last one was worse in one area and a bit better in another.
Liked by Terri Martin., Volunteer Mentor, america, anniepie
suzyqueue
@suzyqueue
@suzyqueue
Posts: 36
Joined: Oct 19, 2018
sounder27
@sounder27
@sounder27
Posts: 99
Joined: Jan 11, 2019
@suzyqueue I was diagnosed in January 2018. Still to this day – no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.
Suzyqueue. Since I am not able to take the big three my pulmonary doc is talking about the amikacin or Arikayce. How is that and is it expensive??? Ate you feeling any side effects??
Liked by anniepie
heathert
@heathert
@heathert
Posts: 541
Joined: Mar 07, 2016
@suzyqueue I was diagnosed in January 2018. Still to this day – no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.
@suyqueue Hopefully it will help, it helped me a great deal and the side effects were minimal. Take Care
Liked by anniepie
heathert
@heathert
@heathert
Posts: 541
Joined: Mar 07, 2016
@anniepie @windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.
@anniepie Sorry to hear that but it can be quite typical, I was the same, it took Inhaled Amikacin to knock mine.
Liked by anniepie
sounder27
@sounder27
@sounder27
Posts: 99
Joined: Jan 11, 2019
@heathert @anniepie Sorry to hear that but it can be quite typical, I was the same, it took Inhaled Amikacin to knock mine.
Heathery. So glad that amikacin helped you so much. Was it expensive. My pulmonary doc wants me to start on it. I have had Mac for 4 years and bronchiectasis as well. He said 2 weeks on and 2 weeks off etc. how often did you take it?
sounder27
@sounder27
@sounder27
Posts: 99
Joined: Jan 11, 2019
@sounder27 Heathery. So glad that amikacin helped you so much. Was it expensive. My pulmonary doc wants me to start on it. I have had Mac for 4 years and bronchiectasis as well. He said 2 weeks on and 2 weeks off etc. how often did you take it?
Heathert. I sent a reply to you but the auto correct sent it to heathery 3 times!!!! Lol. I just wondered how long and how often you took the amikacin? My doc wants me to start on it. Was it expensive??
heathert
@heathert
@heathert
Posts: 541
Joined: Mar 07, 2016
Hi @sounder27 I was on the amikacin for a year, every night. Mine was free as I was in a research project for it thank goodness.
Liked by anniepie
phyllistamara
@phyllistamara
@phyllistamara
Posts: 8
Joined: Feb 02, 2019
@debminuet Phyllis this is Deborah I'm now on my third month of if I ethambutol rifampin Azithro , i'm 57 and originally started taking the rifampin early in the morning only I've changed my routine because I think that's stressful on the body no I take the ethambutol and Azithro with food late morning and then a couple of hours before another middle of the day meal I take the rifampin I don't empty stomach. This way I'm already focused on the day and sufficiently distracted in a conscious way and it tends to stop me from getting anxious at all in reference to the medication side effects . I drink lots of water probiotics and I am very careful not to wear myself out. It's not easy but it's not impossible. Whoever thought I'd be giving these kinds of suggestions Im still being aware of getting needs met and pacing myself I hope it this helps one day at a time. Surround yourself with as much comfort as possible!
Hi Deb. On my 3rd month of Ethambutol and azithromycin. Doing better than I thought I would. Had pneumonia last week so that d@mpened my spirits. Looking good now and will take a c t scan in 2 weeks and then my Dr (infectious disease) will see if he has to put me on Rifabutin. He is very hesitant and wants the best for me but I will know what the scan shows. Here’s hoping it looks okay🤔*
angiejohnson
@angiejohnson
@angiejohnson
Posts: 28
Joined: Feb 13, 2019
@sounder27 Heathert. I sent a reply to you but the auto correct sent it to heathery 3 times!!!! Lol. I just wondered how long and how often you took the amikacin? My doc wants me to start on it. Was it expensive??
@sounder27 I just thought I would chime in on the Arikayce. I have been on it since January 16. Interesting that your doc says one week on, one off. I am recommended daily, but when I lost my voice my doc cut it back to 3 times per week. That has really been my only side effect. I am back to taking it daily, as that is what is recommended by the drug company. It is very expensive, but they provided me a copay card. I pay nothing for it.
Liked by anniepie
@phyllistamara Hi Deb. On my 3rd month of Ethambutol and azithromycin. Doing better than I thought I would. Had pneumonia last week so that d@mpened my spirits. Looking good now and will take a c t scan in 2 weeks and then my Dr (infectious disease) will see if he has to put me on Rifabutin. He is very hesitant and wants the best for me but I will know what the scan shows. Here’s hoping it looks okay🤔*
Phyillis,
Good to hear from you. Im so glad the phnemonia cleared! What's good news is the bacteriais very slow growing so it gives us a chance to make it dealable with. Im on month 7 of big three it's a slog another year to go! Energy levels can really take a swooping slide at times. Getting better though at keeping a 'working modus operandi' going it's a skill! Keep up the good spirits 🙂 Deb
Liked by anniepie
sounder27
@sounder27
@sounder27
Posts: 99
Joined: Jan 11, 2019
@angiejohnson @sounder27 I just thought I would chime in on the Arikayce. I have been on it since January 16. Interesting that your doc says one week on, one off. I am recommended daily, but when I lost my voice my doc cut it back to 3 times per week. That has really been my only side effect. I am back to taking it daily, as that is what is recommended by the drug company. It is very expensive, but they provided me a copay card. I pay nothing for it.
angiejohnson. I am researching the Arikayce now and am wondering who the “they” that you refer to as who provided you with the copay card. Was it your doc or your insurance?? I am on Medicare with an insurance in my part D coverage.
@anniepie
In reply to @anniepie
@windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.