(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…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 don't have a aerobika…hope to get one sometime soon. In the meantime I am just huffing a few times to break the phlegm away from the lung wall, then hacking it up….works better then not. Pardon for the image.

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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 aerobics has been very helpful for my husband. It is an effort for him to use it but it almost always enables him to get some mucus loose and out of his body. Musinex works very well also to loosen the mucus.

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@windwalker

@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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@pamelasc…..I also started the big 3 a few months ago….I also take my meds at nite between 9-10 pm. Take a probiotic in am and another probiotic at 11:00 or so. I'm doing exactly what u r doing, as I saw someone else who was seeing Dr A…the guru from Mayo..this was his suggestion also…both my probiotics are 50 billion each, and 2 different kinds, so all strains are covered. Ultra Flora critical Care, 50 billion, and Dr Formulated, 50 billion also….

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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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Thank you. I could use some help in navigating all of the emails I'm getting. I appreciate the info, but it's taking too much time.

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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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The “discussion board” to which @windwalker refers is the home page or main page of the MAC & Bronchiectasis group here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

When you go to the Group’s homepage, you will see all the topics that have ever been started by members. The most recently active discussions are listed first. Simply click VIEW MORE as you scroll down to see all the topics. The Group page is a fabulous archive of all the discussions and a treasure trove of information.

I have attached some screen shots of how to find the MAC group's homepage when using a cell phone. If you +FOLLOW the MAC group, it will always appear on the Mayo Clinic Connect homepage as one of "My Groups".

Learn more about How to Use Connect here: https://connect.mayoclinic.org/get-started-on-connect/
If you have any questions, feel free to send them to me using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

Finding the Group Directory

MAC group

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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, That is ok Kate, you are amongst friends here who have hacked up plenty.

Liked by tdrell

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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 I have to do what you describe often, especially in the morning. Used to drive my husband crazy. But after my doctor said it was to help clear up the mucous in my lungs, he has learned to live with it now. I cover my mouth with a towel so I won't make too much noise.

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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, I am sorry that the emails are overwhelming you; we are an active bunch! If you go to the home page of Connect; you will see instructions on how to navigate and use the site. You can disconnect the email notifications.

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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 Welcome to our group Marilynn.  You are at the right place to discuss MAC. Many of us are using the big 3 and some of us are using a more natural approach with herbs. It all depends of your lungs conditions and your health conditions.  We have different

opinions from doctors but at the end it all come to the same conclusion.  There is nothing to panic about Mac and bronchiectasis. First thing my ID(microorganism specialist) said to me on my first visit to him.  He said there is many more people who has a

MAC who have never been diagnose because the MAC is not active.  The main important things is to keep your lungs clear from infections.  Some of us use regular antibiotic like cypro, or the big 3 or natural antibiotics.  We all try to find the best approach

to stay healthy!  Have a wonderful week and please do not hesitate to ask all your questions? Love Nick52

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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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Thank you.  It's a little overwhelming to consider yourself rather healthy and then have this come out of the blue!  I'm just inching my way along now and don't know yet exactly what to expect.  Surely appreciate the info and attention of the group.

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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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It seems I read that I should disinfect my shower head periodically. Disinfect how often and with what?

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Hi Katherine, My name is Rebecca and I was just diagnosed with both MAC and bronchectasis and was trying to access the article you referenced in this post but it was a dead link. I know it has been some time since you posted this but thought maybe you had saved the article and could share it. Thanks!

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@desertnurse, Hello, How are you doing these days? Are you under any treatment at this point? I hope that you are alright.

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@rwhite725, Hello Rebecca. Katherine is no longer on this site. I am the mentor for this group now. I am not sure which article you are asking about. I can help you locate it though with a little more info. I need for you to go back to Katherine's post where you saw it, then reply to it by first starting your text with @katemn. Then at the end of your text, type @windwalker. This will direct me to that post.

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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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flib, I use silver in my nebulizer and I intake 1teaspoon 3 times for my immune system. Thanks Rita

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