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!

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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:
- 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.

lauras1949 | @lauras1949 | Aug 18, 2023
In reply to @sueinmn "I'm sorry to say that Kate is no longer with our group. As for the cataract..." + (show)
@sueinmn

I'm sorry to say that Kate is no longer with our group. As for the cataract surgery, I just had that conversation with my eye doc. I am not currently on antibiotics, but she said if I was, we would stop the Ethambutol for about a month before surgery, and 2-3 months afterwards. Apparently this is the protocol, at least in my clinic. The ID doc, pulmonologist and ophthalmologist are all part of the same large group.
Sue

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@sueinmn . Thank you, Sue, for sharing your doctor's policy regarding cataract surgery and ethambutol. It seems like reasonable precautions to take. I will discuss again with my doctor. Meanwhile, I got a a reply from her about the question of my ethambutol dosage. It's actually on the low end. I was forgetting that the mg. on the bottle represent the mg. per kg. of body weight. x my weight in kg. So at least that worry is relieved!

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lauraadam2425 | @lauraadam2425 | Aug 19, 2023
In reply to @maryjanechilds "Hi Laura, Thanks for your post. Please tell me the symptoms you had when you began..." + (show)
@maryjanechilds

Hi Laura,
Thanks for your post. Please tell me the symptoms you had when you began to develop eye problems from the ethambutol?

MJ

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I didn't pass 2 field view test that my eye specialist gave me and she immediately took me off ethambutol. My ID dr concurred and after being off ethambutol for 4 months I was able to pass the test. I continue to see my eye Dr every 3 to 4 months. This doesn't happen to everyone but it is just why you should regularly see an eye specialist while on the big 3.

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vmorton | @vmorton | Oct 17, 2023
In reply to @pfists "@Sounder27 Pseudomonas comes with the Bronchectasis territory. It shows up in a sputum usually within three..." + (show)
@pfists

@sounder27
Pseudomonas comes with the Bronchectasis territory. It shows up in a sputum usually within three days. Its treated with cipro leviquin or tobramyacin usually. They usually do a susceptibility test to see which antibiotic works best.
Shari

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Replying to @sounder27 I have had bronchiectasis since I was 16 and I am now 74. I clear my lungs at least once a day and do okay. I wonder what the best position is for sleeping.

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1 reply
sweethighland | @sweethighland | Oct 17, 2023
In reply to @vmorton "Replying to @sounder27 I have had bronchiectasis since I was 16 and I am now 74...." + (show)
@vmorton

Replying to @sounder27 I have had bronchiectasis since I was 16 and I am now 74. I clear my lungs at least once a day and do okay. I wonder what the best position is for sleeping.

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Thank you Vmorton. I assume you do not grow any bacteria although you have bronchiectasis. May I know your lungs clearing method. I'm working very hard to learn and gather more information as much as possible in order to get rid of the bug I have in my lungs without antibiotics. I also want to know the best sleeping position as well.

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1 reply
suzyqueue | @suzyqueue | Oct 18, 2023

I have found that sleeping reclined is helpful....for breathing as well

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vmorton | @vmorton | Oct 18, 2023
In reply to @sweethighland "Thank you Vmorton. I assume you do not grow any bacteria although you have bronchiectasis. May..." + (show)
@sweethighland

Thank you Vmorton. I assume you do not grow any bacteria although you have bronchiectasis. May I know your lungs clearing method. I'm working very hard to learn and gather more information as much as possible in order to get rid of the bug I have in my lungs without antibiotics. I also want to know the best sleeping position as well.

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@sounder27 I periodically grow bacteria and become ill. I am usually given antibiotics and there have been times when finding the right antibiotics has taken some time. I also one had a particularly bad bacteria and to prevent it from colonizing, I was given Tobramyacin for a year (1 month on and 1 month off) For the most part I have done well and I believe that has a lot to do with the regimen I have for clearing my lungs. I use my nebulizer at least once a day. The meds I use with nebulizer are hypersal saline solution with albutrol Sulfate. I also use a technique called autogenic breathing, which I was taught when I was in my 30's. I do it also at least once a day. Clearing my lungs, using my two inhalers twice a day, plus taking Azithromycin 3 times a week is keeping me mostly free from bacteria and illness. I found out that for best sleeping position, it is on your right side. However, if you have to sleep on your back, just make sure the top of your bed is raised so that your head is above your heart, and your lower bed is raised up to slightly raise your legs.

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3 replies
irenea8 | @irenea8 | Oct 19, 2023
In reply to @vmorton "@sounder27 I periodically grow bacteria and become ill. I am usually given antibiotics and there have..." + (show)
@vmorton

@sounder27 I periodically grow bacteria and become ill. I am usually given antibiotics and there have been times when finding the right antibiotics has taken some time. I also one had a particularly bad bacteria and to prevent it from colonizing, I was given Tobramyacin for a year (1 month on and 1 month off) For the most part I have done well and I believe that has a lot to do with the regimen I have for clearing my lungs. I use my nebulizer at least once a day. The meds I use with nebulizer are hypersal saline solution with albutrol Sulfate. I also use a technique called autogenic breathing, which I was taught when I was in my 30's. I do it also at least once a day. Clearing my lungs, using my two inhalers twice a day, plus taking Azithromycin 3 times a week is keeping me mostly free from bacteria and illness. I found out that for best sleeping position, it is on your right side. However, if you have to sleep on your back, just make sure the top of your bed is raised so that your head is above your heart, and your lower bed is raised up to slightly raise your legs.

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If you have GERD or silent reflux you are supposed to sleep on your LEFT side, not right side. Back is ok too. Raised up 30 degrees.

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sweethighland | @sweethighland | Oct 19, 2023
In reply to @vmorton "@sounder27 I periodically grow bacteria and become ill. I am usually given antibiotics and there have..." + (show)
@vmorton

@sounder27 I periodically grow bacteria and become ill. I am usually given antibiotics and there have been times when finding the right antibiotics has taken some time. I also one had a particularly bad bacteria and to prevent it from colonizing, I was given Tobramyacin for a year (1 month on and 1 month off) For the most part I have done well and I believe that has a lot to do with the regimen I have for clearing my lungs. I use my nebulizer at least once a day. The meds I use with nebulizer are hypersal saline solution with albutrol Sulfate. I also use a technique called autogenic breathing, which I was taught when I was in my 30's. I do it also at least once a day. Clearing my lungs, using my two inhalers twice a day, plus taking Azithromycin 3 times a week is keeping me mostly free from bacteria and illness. I found out that for best sleeping position, it is on your right side. However, if you have to sleep on your back, just make sure the top of your bed is raised so that your head is above your heart, and your lower bed is raised up to slightly raise your legs.

Jump to this post

Thank you for sharing. Do you do postural drainage too? With Azithromycin 3 times week, I assume 250mg. Does it hurt your stomach? How long have you been taking it? I want to know that particularly bad bacteria you had and treated with Tobramycin. The bacteria I have is sensitive to Tobramycin but my doctors never mention about treating with it.

REPLY
1 reply
bbeers | @bbeers | Oct 20, 2023
In reply to @vmorton "@sounder27 I periodically grow bacteria and become ill. I am usually given antibiotics and there have..." + (show)
@vmorton

@sounder27 I periodically grow bacteria and become ill. I am usually given antibiotics and there have been times when finding the right antibiotics has taken some time. I also one had a particularly bad bacteria and to prevent it from colonizing, I was given Tobramyacin for a year (1 month on and 1 month off) For the most part I have done well and I believe that has a lot to do with the regimen I have for clearing my lungs. I use my nebulizer at least once a day. The meds I use with nebulizer are hypersal saline solution with albutrol Sulfate. I also use a technique called autogenic breathing, which I was taught when I was in my 30's. I do it also at least once a day. Clearing my lungs, using my two inhalers twice a day, plus taking Azithromycin 3 times a week is keeping me mostly free from bacteria and illness. I found out that for best sleeping position, it is on your right side. However, if you have to sleep on your back, just make sure the top of your bed is raised so that your head is above your heart, and your lower bed is raised up to slightly raise your legs.

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Just taking everything in since I am new to MAC disease. Am I to assume that you do not have MAC but periodically you end up with some type of lung infection which causes you to have to take an antibiotic. I have not started the Big 3 and haven't decided as to whether I will. So many side effects. I am 75 and wondering if it's worth getting some other problem from the meds at this stage of my life. Thank you

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2 replies
irenea8 | @irenea8 | Oct 20, 2023
In reply to @sweethighland "Thank you for sharing. Do you do postural drainage too? With Azithromycin 3 times week, I..." + (show)
@sweethighland

Thank you for sharing. Do you do postural drainage too? With Azithromycin 3 times week, I assume 250mg. Does it hurt your stomach? How long have you been taking it? I want to know that particularly bad bacteria you had and treated with Tobramycin. The bacteria I have is sensitive to Tobramycin but my doctors never mention about treating with it.

Jump to this post

Tobramycin is generally used for Pseudomonas.

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