(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

I did bring up the subject of MAC to my doctor and he looked dumbfounded but consulted a colleague and said I was not to restrict myself from all the things mentioned in the conference I watched.

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@katemn

@gaylejean, I am REALLY sorry you have not received an answer .. I guess we were all hoping/waiting for someone to jump in who knew what NET was? I just googled it and found: What is a Lung NET? Lung NETs are an uncommon type of tumour that start in the lungs. These tumours can occur at any age with the average onset in the 4th to 6th decade of life. They tend to grow slower than other types of lung cancers. They are made up of special kinds of cells called neuroendocrine cells. Other terms you may come across are pulmonary NET, bronchial NET or carcinoid or lung NET or carcinoid. ‘Pulmonary’ and ‘bronchial’ are both medical terms relating to the lungs

GayleJean, do you mind if I post your question under “Lungs” .. perhaps you might get more of a response from there .. people with the same issue? I will also post the definition I found. I really hope you find others who can support you. So sorry! Katherine

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I have been reading all these posts about MAC and don't know if they relate to my carcinoid which is in small intestine. Can anyone answer that? I have not been diagnosed with lung NETs.

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@katemn

@gaylejean, I am REALLY sorry you have not received an answer .. I guess we were all hoping/waiting for someone to jump in who knew what NET was? I just googled it and found: What is a Lung NET? Lung NETs are an uncommon type of tumour that start in the lungs. These tumours can occur at any age with the average onset in the 4th to 6th decade of life. They tend to grow slower than other types of lung cancers. They are made up of special kinds of cells called neuroendocrine cells. Other terms you may come across are pulmonary NET, bronchial NET or carcinoid or lung NET or carcinoid. ‘Pulmonary’ and ‘bronchial’ are both medical terms relating to the lungs

GayleJean, do you mind if I post your question under “Lungs” .. perhaps you might get more of a response from there .. people with the same issue? I will also post the definition I found. I really hope you find others who can support you. So sorry! Katherine

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Hi Gayle,
If you click View & Reply in the email notice then scroll up 7 messages you’ll see my response to your query about NET and MAC.

The short answer is that I could find no evidence that supports a predisposition to MAC if you have carcinoid of the small intestine. Dont hesitate to ask your oncologist if you are worried.

However, I believe you may be causing yourself undue concern by reading the MAC discussions.

If you wish to unsubscribe fro the MAC discussion, please click “unsubscribe” in the bottom of the email.
I hope this helps.

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@katemn

@gaylejean, I am REALLY sorry you have not received an answer .. I guess we were all hoping/waiting for someone to jump in who knew what NET was? I just googled it and found: What is a Lung NET? Lung NETs are an uncommon type of tumour that start in the lungs. These tumours can occur at any age with the average onset in the 4th to 6th decade of life. They tend to grow slower than other types of lung cancers. They are made up of special kinds of cells called neuroendocrine cells. Other terms you may come across are pulmonary NET, bronchial NET or carcinoid or lung NET or carcinoid. ‘Pulmonary’ and ‘bronchial’ are both medical terms relating to the lungs

GayleJean, do you mind if I post your question under “Lungs” .. perhaps you might get more of a response from there .. people with the same issue? I will also post the definition I found. I really hope you find others who can support you. So sorry! Katherine

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@gaylejean, Gayle, I ABSOLUTELY could not agree with Colleen more! Over the years my husband and I have dealt with numerous health issues .. how? By ONLY dealing with them when/IF they were NEEDED to be dealt with .. NOT putting the cart before the horse .. if the health issue was NOT “in our face” .. we dealt beautifully with it with “denial” .. it did not exist! We just went on with our lives .. happily .. serenely .. as healthily as we possibly could!

Gayle, as Colleen mentioned .. I would just focus on being as happy and healthy as you possibly can .. work out as best you can .. eat healthy .. focus on healthy happy relationships .. work on being as serene as you possibly can .. remembering that stress can damage our health. Sending you a happy healthy Hug! Katherine

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@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing’s wrong w her. I’m sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I’m freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

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@chinasmom, Becky, thank you jumping in .. that is REALLY good advice! Hugs to you! Katherine

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@katemn Hi Katherine: We all learn from Mayo Connect, don’t we? Glad to find a new person with NET! Teresa

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@katemn

@faithup
Sent on Sat, Mar 11, 2017 at 8:17 am

Hello Kate, I had been reading posts this morning. Im thrilled to find your blog. I do not routinely use social media. Therefore im not sure if I am connecting to the blog properly. If not please advise. I was diagnosed late December 2016. I have been on the 3 medications since New Years Day. I also have Sjogren’s Syndrome. I am a nurse who has worked in a hospital setting x34 yrs. I read one can contract this from hospital water supllies (but who knows). I had also taken a supervisory role 2 yrs ago in which i was working 55-60+ hours per week. I believe i ran my autoimmune status crazy and weakened myself. I have now stepped down from my position to rest. I am startimg a part time position this week. I live in northwest Indiana. I spoke with one other MAC patient on the phone. She had it 7 years ago and has it again. She traveled to Jewish National in Colorado for care. I took a 4 week leave of absence at the beginning however lately i feel more tired at the present. I was taken off the Myambutol for two weeks due to hearing tones, fine motor shaking and locking onto a thought and dwelling on it. Now my infectious disease MD re-initiated the med stating its the best course. I do not cough up any sputum. I obtained an acapella valve to bresthe into with no results. I informed my infectious disease MD of this and he said i may not bring anything up. So much more to share. Will connect again. I hope all the Floridians feel better soon. Teach me how to enter the blog site. Thank you for your time and effort. P. S. I am following a “nutritarian diet” for the clean eating aspect. A book by author Dr. Joel Furhman has opened my eyes to many diet related health issues

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Dear @faithup .. do you have a first name .. more personal! I am SO glad you found us! I have moved your post to our main MAC and Bronchiectasis Forum because I want you to meet all our wonderful supportive and welcoming members! But also as you find time to read the past pages of the Forum you will find a wealth of information on our shared MAC disease .. tips and knowledge. You will be SO glad you learned more! Knowledge is power and truthfully by the end you are going to know more about our shared disease than a lot of doctors do!

I also do not use social media .. this is my one and only .. but it has been a life saver .. I have learned so much! You are correct .. NO ONE knows just how we get MAC .. and actually it doesn’t matter .. all that matters is that you are being WISE in taking a less stressful work situation to take care of You! Jewish National is outstanding .. I go to Dr. Timothy Aksamit at Mayo Clinic, Rochester MN where there is also an outstanding team .. I have been blessed.

The Acapella did zero for me also. You said ” I do not cough up any sputum. ” I learned about the Aerobika airway clearance device here on the Forum. I have found it REALLY helpful in getting up the sputum. Remember .. the sputum can become a breeding ground for further mycobacterium. If I was you .. I would order one right away!

AEROBIKA
http://www.aerobika-therapy.com/order-today/
Members @decosmo and @maryjo2sell who have given great info about the Aerobika in the past.*Aerobika. I highly recommend it. I love mine. I have 2. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. Always clean with distilled water or antibacterial dish soap and rinse VERY well. I have had mine for at least 2 years.

Also very helpful to increase lung capacity: Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com Read the reviews and how to use at https://www.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I

@faithup, tell us more about the ” A book by author Dr. Joel Furhman has opened my eyes to many diet related health issues” .. we are big on sharing here on the Forum .. with the attitude “take what you need and leave the rest!”

@faithup, you said “Teach me how to enter the blog site.” .. all you have to do now is when you receive this reply post .. just hit “View & Reply” .. the blue box at the bottom of the email .. and you will then be at HOME in our little supportive community! Sending you a welcoming Hug! Katherine

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@katemn, first of all thank you for the time you take almost hourly to help everyone! You had mentioned the website to buy the Aerobika breathing device. There are several different types of things to buy on that website….which ones would be recommended. My name is Amy, and as I stated earlier this week, I will be starting the 3 meds on Tuesday. I currently have no inhaler of any kind, but my doctor is prescribing the Alcopella, which sounds like it may not be useful. Thank you for help once again! Amy

REPLY
@katemn

@gaylejean, I am REALLY sorry you have not received an answer .. I guess we were all hoping/waiting for someone to jump in who knew what NET was? I just googled it and found: What is a Lung NET? Lung NETs are an uncommon type of tumour that start in the lungs. These tumours can occur at any age with the average onset in the 4th to 6th decade of life. They tend to grow slower than other types of lung cancers. They are made up of special kinds of cells called neuroendocrine cells. Other terms you may come across are pulmonary NET, bronchial NET or carcinoid or lung NET or carcinoid. ‘Pulmonary’ and ‘bronchial’ are both medical terms relating to the lungs

GayleJean, do you mind if I post your question under “Lungs” .. perhaps you might get more of a response from there .. people with the same issue? I will also post the definition I found. I really hope you find others who can support you. So sorry! Katherine

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Thank you!

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@beatitnow, Hi Amy, thank you for the kind words! If you go to: http://www.aerobika-therapy.com/order-today/ .. it shows the one I ordered .. and I think the one everyone on our Forum uses. Just to make sure .. when you start your meds on Tuesday .. I would recommend that you request that you start ONE antibiotic at a time for ONE WEEK .. or at LEAST 4-5 days before adding a second antibiotic .. so you can tell EXACTLY which/what antibiotic is causing ANY potential side effect and you can isolate it .. hopefully watching for a side effect dwindling etc. THEN introduce a SECOND antibiotic. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!

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!

From my “File Cabinet” .. 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 – they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela

When you say your doctor mentioned “Alcopella” .. I think you mean ACAPELLA? https://www.smiths-medical.com/products/respiratory/bronchial-hygiene/acapella-vibratory-pep-therapy-system. It is VERY similar to the Aerobika but has not seemed to work as well for many of us .. AND is not as easy to keep sterilized. ASK your doctor: If I must invest in just ONE .. is it ok if I invest in the Aerobika? Tell the doctor .. I have a “friend” who has used both and has found the Aerobika MUCH more effective and easy to steralize ! See if your doctor is ok with purchasing the Aerobika. Frankly my own doctor told me about the Acapella .. I didn’t even find out about the more effective Aerobika EXCEPT here on our wonderful little MAC Forum and just went ahead and bought it .. it IS my body and my lungs! How do I use the Aerobika? This is JUST MY routine:

Below is my particular routine in using my Aerobika from my “File Cabinet”
1. use my 2 inhalers PRIOR to brushing my teeth (the inhalers open the airways .. ask your doctors IF you should be using one .. everyone is different!!)
2. use a “huff” cough at least 3 times .. like you were cleaning your glasses and fog them with your breath .. only MORE forcefully. Then use the Aerobika device per the instructions. Do the huff cough along with the Aerobika until you feel you have gotten up as much sputum as you possibly can. I have found using the Aerobika you are able to ” pull” mucous out of those lower lung airways in a way you cannot without the device. Personally I do this twice a day.
3. using peroxide to dampen my toothbrush and toothpaste to brush (purchased a squirt dispenser for the peroxide)
4. rinse my toothbrush .. then using peroxide for toothbrush storage for sterilizing
I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm
5. Use my Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com

Amy, hope the above helps just as bit! Keep us posted on your progress .. we are here for you every step of the way! Hugs to you! Katherine

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@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing’s wrong w her. I’m sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I’m freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

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You are misspelling the last, so would be great to get me correct name/spelling; know the others. I think she needs a new Rheumatologist as well. I believe she is over-medicated so no surprise adding the strong MAC drugs is problematic. Are the litany of drugs she’s taking for her RA managing it for her? Also, Celebrex cannot be taken over a long period as can cause damage to the stomach lining. Please get her to the University to see both Rheumy and ID docs…Hopefully they’ll straighten out the drug mess she seems to be in. Agree with post re: prophylactics to ease her symptoms once she’s d/c’d the MAC drugs until you get her to a good doc.

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@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing’s wrong w her. I’m sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I’m freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

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@boomerexpert, Boomer, thank you for jumping in since you are so familiar with getting her to a good Rheumatologist .. but could I suggest that you begin your post with the @ilgrp4e, Carmen .. since we have so many members/posts that our various posts do not get posted directly under a new member’s original post? New members are not as familiar with just how our Forum works. Again, thank you for jumping in with good advice that our MAC members might not be familiar with. Katherine

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@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing’s wrong w her. I’m sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I’m freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

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Will do…sorry I didn’t think of that. If she gets notification via email of new posts, hopefully she’ll get’em in the meantime.

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@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing’s wrong w her. I’m sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I’m freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

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Boomer, not to worry .. since I included @ilgrp4e, Carmen in my post to you .. I think she will follow the posts .. good job .. thank you! Katherine

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@pamelasc1 and @katemn and EVERYONE WELCOME FOR COMMENTS, Thank you for all the information. I have saved it…thank you, thank you. Just to clarify….you took ALL your pills in one sitting before you went to bed? I am taking pills 3 days a week, so for two drugs 2 pills a day, the other is actually 12 pills a day (my pharmacy did not carry the higher mg dosage for the ethambutol. When I talked to the Walgreens pharmicist, she suggested taking the rifampin on its own a minimum of 2 hours before or after other drugs and on an empty stomach. What do you think?

IF ANYONE would like to jump in and tell me how they successfully took their medicine please do. I will “try my best” to look back at previous reviews before tomorrow, but I am starting to get a little stressed because I was thinking about starting the drugs tomorrow, Monday….I have to see how comfortable I feel. (I had been planning on T, Th, Sa), but then I thought maybe I should just do M,W,F’s. Ughh….this is nerve wrecking! :/ Thank you for your help.

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@beatitnow

@pamelasc1 and @katemn and EVERYONE WELCOME FOR COMMENTS, Thank you for all the information. I have saved it…thank you, thank you. Just to clarify….you took ALL your pills in one sitting before you went to bed? I am taking pills 3 days a week, so for two drugs 2 pills a day, the other is actually 12 pills a day (my pharmacy did not carry the higher mg dosage for the ethambutol. When I talked to the Walgreens pharmicist, she suggested taking the rifampin on its own a minimum of 2 hours before or after other drugs and on an empty stomach. What do you think?

IF ANYONE would like to jump in and tell me how they successfully took their medicine please do. I will “try my best” to look back at previous reviews before tomorrow, but I am starting to get a little stressed because I was thinking about starting the drugs tomorrow, Monday….I have to see how comfortable I feel. (I had been planning on T, Th, Sa), but then I thought maybe I should just do M,W,F’s. Ughh….this is nerve wrecking! :/ Thank you for your help.

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@pamelasc1…in addition to the question I just wrote back to you, I was curious…are you losing weight because you have lost your appetite with taking the 3 medications? Are you trying to add calories?…just curious what to expect. Thank you!!

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