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.

auntnanny | @auntnanny | Aug 25, 2018
In reply to @auntnanny "Windwalker ---- thank you for this post. I have been doing what I think is pretty..." + (show)
@auntnanny

Windwalker ---- thank you for this post. I have been doing what I think is pretty well for about 10 months now. Have had only two sessions of antibiotics in that time. (Better than when I started with every two weeks). I have been nebulizing once daily with albuterol followed by saline (as told by Mayo doctors in Rochester. Also, I have been using two Benadryl capsules each day which it seems to me have been really helpful. I worry, though..... wondering if I am masking symptoms. After the saline, I can usually cough up a little bit of phlegm -- but not much. I'm hoping that is all that's in the lungs but wonder if the Benadryl is detrimental. I do have allergies and I don't have the nasal drainage when I use it. I feel okay (I think) -- sometimes I wonder if I truly know how I feel. But, I'm not short of breath -- have never been -- and doing what I am, I'm not coughing much. One session of the saline seems mighty helpful in that if my throat needs clearing often, it feels clear after the saline. I started with 3 mg of saline but as I purchased more through Amazon, the last I've had is 9. I just sit a little longer and do the larger amount and am assume that's okay. Do you have an opinion about this? Appreciate your comments are you are without question -- quite knowledgeable. Thank you

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It says 0.9% ----- so should that mean that I'm actually not getting quite 1 per cent. I know Mayo's started me on 3%. Perhaps I should look for something much stronger????

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Flib | @flib | Aug 25, 2018

@windwalker My pulmonologist has me on 3% Said she didn't think I could withstand a higher dosage. Not sure what she meant but I'm seeing her Friday and will ask about it.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2018

@flib, That's right, you had mentioned that before.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2018
In reply to @auntnanny "flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer..." + (show)
@auntnanny

flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer and it's 9 cc but I thought if I didn't want to use that much, it was still less expensive than a prescription. I've used this for about a year now and as far as I can tell, it's the same as a prescription. You might look at the inhalation saline there and see what you think.

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@auntnanny Hey, I just noticed that you put your picture on here. What a beautiful face you have!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2018
In reply to @auntnanny "Windwalker ---- thank you for this post. I have been doing what I think is pretty..." + (show)
@auntnanny

Windwalker ---- thank you for this post. I have been doing what I think is pretty well for about 10 months now. Have had only two sessions of antibiotics in that time. (Better than when I started with every two weeks). I have been nebulizing once daily with albuterol followed by saline (as told by Mayo doctors in Rochester. Also, I have been using two Benadryl capsules each day which it seems to me have been really helpful. I worry, though..... wondering if I am masking symptoms. After the saline, I can usually cough up a little bit of phlegm -- but not much. I'm hoping that is all that's in the lungs but wonder if the Benadryl is detrimental. I do have allergies and I don't have the nasal drainage when I use it. I feel okay (I think) -- sometimes I wonder if I truly know how I feel. But, I'm not short of breath -- have never been -- and doing what I am, I'm not coughing much. One session of the saline seems mighty helpful in that if my throat needs clearing often, it feels clear after the saline. I started with 3 mg of saline but as I purchased more through Amazon, the last I've had is 9. I just sit a little longer and do the larger amount and am assume that's okay. Do you have an opinion about this? Appreciate your comments are you are without question -- quite knowledgeable. Thank you

Jump to this post

@auntnanny Did you see the chart that @alleycatkate posted about the different strengths of saline being able to kill mycobacteriums? The stronger ones probably do need a prescription.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2018
In reply to @auntnanny "Windwalker ---- thank you for this post. I have been doing what I think is pretty..." + (show)
@auntnanny

Windwalker ---- thank you for this post. I have been doing what I think is pretty well for about 10 months now. Have had only two sessions of antibiotics in that time. (Better than when I started with every two weeks). I have been nebulizing once daily with albuterol followed by saline (as told by Mayo doctors in Rochester. Also, I have been using two Benadryl capsules each day which it seems to me have been really helpful. I worry, though..... wondering if I am masking symptoms. After the saline, I can usually cough up a little bit of phlegm -- but not much. I'm hoping that is all that's in the lungs but wonder if the Benadryl is detrimental. I do have allergies and I don't have the nasal drainage when I use it. I feel okay (I think) -- sometimes I wonder if I truly know how I feel. But, I'm not short of breath -- have never been -- and doing what I am, I'm not coughing much. One session of the saline seems mighty helpful in that if my throat needs clearing often, it feels clear after the saline. I started with 3 mg of saline but as I purchased more through Amazon, the last I've had is 9. I just sit a little longer and do the larger amount and am assume that's okay. Do you have an opinion about this? Appreciate your comments are you are without question -- quite knowledgeable. Thank you

Jump to this post

@auntnanny Here is the saline chart. The chart is located near the end of the article. @flib, you may want to show this to your doctor. You can push the 'bookmark' tab underneath our texts to save it there. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/

REPLY
auntnanny | @auntnanny | Aug 26, 2018
In reply to @auntnanny "flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer..." + (show)
@auntnanny

flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer and it's 9 cc but I thought if I didn't want to use that much, it was still less expensive than a prescription. I've used this for about a year now and as far as I can tell, it's the same as a prescription. You might look at the inhalation saline there and see what you think.

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windwalker……. that was taken about 5 years ago..... but thank you

REPLY
auntnanny | @auntnanny | Aug 26, 2018
In reply to @auntnanny "Windwalker ---- thank you for this post. I have been doing what I think is pretty..." + (show)
@auntnanny

Windwalker ---- thank you for this post. I have been doing what I think is pretty well for about 10 months now. Have had only two sessions of antibiotics in that time. (Better than when I started with every two weeks). I have been nebulizing once daily with albuterol followed by saline (as told by Mayo doctors in Rochester. Also, I have been using two Benadryl capsules each day which it seems to me have been really helpful. I worry, though..... wondering if I am masking symptoms. After the saline, I can usually cough up a little bit of phlegm -- but not much. I'm hoping that is all that's in the lungs but wonder if the Benadryl is detrimental. I do have allergies and I don't have the nasal drainage when I use it. I feel okay (I think) -- sometimes I wonder if I truly know how I feel. But, I'm not short of breath -- have never been -- and doing what I am, I'm not coughing much. One session of the saline seems mighty helpful in that if my throat needs clearing often, it feels clear after the saline. I started with 3 mg of saline but as I purchased more through Amazon, the last I've had is 9. I just sit a little longer and do the larger amount and am assume that's okay. Do you have an opinion about this? Appreciate your comments are you are without question -- quite knowledgeable. Thank you

Jump to this post

Oh my goodness, that is a large collection of data. I'm not dealing with MAC (at least not yet)….. but I'm going to email Dr Moua in Rochester and tell him that perhaps I need a prescription for a larger amount of saline. Obviously, 0.9% is next to nothing. I've been doing well for about 10 months now and I would surely like to continue. Thank you for all the interest you take in everyone's problems and for being able to point us in the right direction. Thank You

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2018
In reply to @auntnanny "Windwalker ---- thank you for this post. I have been doing what I think is pretty..." + (show)
@auntnanny

Windwalker ---- thank you for this post. I have been doing what I think is pretty well for about 10 months now. Have had only two sessions of antibiotics in that time. (Better than when I started with every two weeks). I have been nebulizing once daily with albuterol followed by saline (as told by Mayo doctors in Rochester. Also, I have been using two Benadryl capsules each day which it seems to me have been really helpful. I worry, though..... wondering if I am masking symptoms. After the saline, I can usually cough up a little bit of phlegm -- but not much. I'm hoping that is all that's in the lungs but wonder if the Benadryl is detrimental. I do have allergies and I don't have the nasal drainage when I use it. I feel okay (I think) -- sometimes I wonder if I truly know how I feel. But, I'm not short of breath -- have never been -- and doing what I am, I'm not coughing much. One session of the saline seems mighty helpful in that if my throat needs clearing often, it feels clear after the saline. I started with 3 mg of saline but as I purchased more through Amazon, the last I've had is 9. I just sit a little longer and do the larger amount and am assume that's okay. Do you have an opinion about this? Appreciate your comments are you are without question -- quite knowledgeable. Thank you

Jump to this post

@auntnanny You are welcome! If you are doing fine with what you are doing; maybe you should stay that course. For some people, mac and mai just goes away on its own. I guess it is a discussion for your doctor.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2018
In reply to @auntnanny "flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer..." + (show)
@auntnanny

flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer and it's 9 cc but I thought if I didn't want to use that much, it was still less expensive than a prescription. I've used this for about a year now and as far as I can tell, it's the same as a prescription. You might look at the inhalation saline there and see what you think.

Jump to this post

@auntnanny my posted photo is 3 yrs old. It was current when I began posting on Connect. I look a little different now. Hair is longer and lighter. A few more wrinkles and light baggage under the eyes. I have been meaning to update my photo.

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