(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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

@alleycatkate

Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures…etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

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I'm having problems with vomiting and weakness. I couldn't take Rifampin because I was vomiting and now on moxifloxacin and vomiting again. Have no appetite. Also on clarithromycin and ethambutol. Any suggestion

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@alleycatkate

Hello…Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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Yes its one of the easiest methods to keep our lungs clean.
Have you heard about the men that worked in salt mines, their lung conditions cleared up.
I actually visited a hymalayan salt cave created here in Minneapolis.

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@alleycatkate

Hello…Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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You got it right…this study found 3 levels of salt (salinity) resistance (from least to most resistant): Group 1 includes “salt-sensitive” species (growth up to ≤3 % salt); Group 2 includes the “salt-intermediate” species (growth up between to 4 and 6 % salt), while Group 3 includes “salt-resistant” species (growth up to >6 % salt)

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@alleycatkate

Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures…etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

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My husband has re-started taking Azrithmyocin, Rifampin and Ethambutol. He gets diarrhea but the Infectious Disease doctor said as long as it does’nt get worse, to continue. He is taking the drugs following a solid meal after lunch and dinner. That seems to help quite a bit. He also does not have much of an appetite but he is able to force food down. I fix him whatever he is hungry for. He was already weak so I can’t say the drugs have caused weakness. Try your favorite foods and then take 1 – 3 pills following that meal and then the next solid meal, try the remaining 1 – 2 pills. My husband takes 4 pills per day. I hope this helps you.

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@alleycatkate

Hello…Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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@alleycatkate Great job on finding this article with the sensitivity chart in it. Further proof that my doctor is on the ball. (In my opinion) After reading that, I want to be more diligent about my saline nebulizing. I did it this a.m. Thanks a million Kate!

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@alleycatkate

Hello…Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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Newly diagnosed, new member to this group. What does this about saline mean to me? Is this similar to using Navage?

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@alleycatkate

Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures…etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

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@mary1944 This is a post that @suzie2017 recently posted. "My husband has re-started taking Azrithmyocin, Rifampin and Ethambutol. He gets diarrhea but the Infectious Disease doctor said as long as it does’nt get worse, to continue. He is taking the drugs following a solid meal after lunch and dinner. That seems to help quite a bit. He also does not have much of an appetite but he is able to force food down. I fix him whatever he is hungry for. He was already weak so I can’t say the drugs have caused weakness. Try your favorite foods and then take 1 – 3 pills following that meal and then the next solid meal, try the remaining 1 – 2 pills. My husband takes 4 pills per day. I hope this helps you."

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@alleycatkate

Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures…etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

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@mary1944 I am so sorry that you are experiencing so much nausea with your meds. I put nausea up there with toothaches – no fun. Every body reacts to the meds differently under various circumstances. Try playing with your med schedule until you find what works. Some members have said that taking them on a full stomach helped, while others have said taking the ethambutol first thing in the morning on an empty stomach helped. One causes insomnia, so take that one early in the day. If you scroll to the top of this page, you will find a blank box with the word 'search…' ; type the words 'rifampin, clarithromycin, etc. in there or other key words and related posts will pop up for you to read. Let me know if you have trouble doing that.

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@alleycatkate

Hello…Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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The saline is great for the lungs but the problem is the water where the MAC live.  As @windwalker said in an article read and the one posted by @alleycatkate article posted Make sure to boil the faucet water for at least 10 minutes.  I wonder if MAC is in

purified or distilled water?  

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@mary1944 More to keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most.

ANTIBIOTICS .. SCHEDULING ..DIFFERENT MEMBERS
TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.

BEST
Here from one of our members is what I think is REALLY good advice on starting the antibiotics .. hope it helps you! Keep in mind .. YOU may NOT feel “lousy” the first month .. each of our bodies are DIFFERENT .. each of our bodies will react differently .. but the advice I just excellent!

SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut – the antibiotics wreak havoc with the gut. This can help with nausea – I take my probiotic with breakfast or lunch – do not take it late in the day. I use Ultra Jarro-Dophilus – 50 billion per capsule – will find in the frig at any health food store – I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts.

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@alleycatkate

Hello…Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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@marilyns Ask your pulmonologist for a prescription for a nebulizer and 7% solution of saline. Terri's Dr at Mayo Clinic suggests 2x a day and says that everyone with MAC should be doing it. Mayo Clinic is cutting edge. Terri @windwalker says that the saline makes it difficult for the bacteria to survive. This article seems to support that thought…looks as if the 7% actually kills it. (Could we be that lucky?) Follow the instructions to nebulize the saline into your lungs. It is simple. Also read up on Nebulizing Saline solutions so that you feel confident about doing so. I did not find any down side to it when I looked online (exception for Cystic Fibrosis patients that need to do something additional to open up the passages). It should make you cough and maybe the entire pippet may initially be too much so maybe do a little less…but afterwards you nebulize, you will need to huff, huff a few times from down deep in your chest untill you loosen the sputum and then spit the phlegm out. There are also some devices that you should consider using after nebulizing… one is called a flutter valve and the other is an aerobika. Their purpose is to loosen the phlegm off of the lung wall so you can get it out. I don't have one yet as I am also pretty new to this….and just learning the ropes. Not all Dr's will instruct you to do this and you will find that there are still Dr's that are treating old school. Mine did not suggest anything going forward…just sit and wait..I am not a sit and wait gal so I got my GP to script it for me and am looking for a new pulmonologist. I am also new here, diagnosed last month in June so it has been a real education. I do not know what Navage is??? Kate

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@alleycatkate

Hello…Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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@windwalker …I think it is the nebulizing that is giving me lots of energy…Not sure but feeling really good….Could it be that these bacteria stinkers are just die-ing off? Thanks for sharing your Dr's protocol. I have not met the man but already love him. haha.

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