(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

@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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@donut, Donna, a question I have been pondering .. DID they stop your antibiotic treatment AFTER negative sputum cultures for TWELVE months which is standard procedure? What was the criteria for stopping your treatment .. what reason did they give you? Also .. what type of doctor were you being treated by? An Infectious Disease doctor who treated other MAC patients? Just wondering? Hugs! Katherine

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@katemn

Pam, this is how Colleen said to do it .. hope this helps! Hugs! Katherine

MAYO CLINIC CONNECT-DAILY DIGEST ONLY
Way to change the settings so that you only get the Digest at the end of each day, and/or just get responses to emails you send?”
1. Follow only those groups you are interested in, for example the “MAC & Bronchiectasis” group https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Go to your Account Settings here: https://connect.mayoclinic.org/account/
3. Scroll to Notifications section of the page.
4. Choose the time of day you would like to receive the daily digest.
5. Be sure to tick the box that says “Only include the specific threads and groups this user follows in their digest.”
If you wish to unsubscribe from receiving individual email notices for every post made to a discussion, simply click “Unsubscribe from this discussion thread.” at the bottom of the email.
For more helpful tips on using Connect, see this page https://connect.mayoclinic.org/get-started-on-connect/

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This is Pamela – thank you everyone for all the very useful information – I read my Digest diligently every morning and learn something new each time.  Yesterday, Jan 29th someone mentioned getting tested AFTER the 18 month treatment for MAC and that the tests should be done at least 3 times and show no signs of MAC before one can feel they are in the clear.  How often should the sputum tests be done after the 18 months?… every 6 weeks, every 3 months?…. I finish up my 18 month regime in April.  Pam   

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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Thanks for writing Katherine. You have forgotten me. I realize you're well known here and it's difficult keeping track of everyone. Note though, I've been online almost a year now with this same Mayo Clinic group. I really appreciate the discussions and participation.We are bitter cold here in Toronto with sunshine. Have a wonderful day.still on meds,thanks!Tessie

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@tdrell

Ladies……when we comment about getting a sputum specimin, I believe it should indicate “AFB smear.”acid fast bacillus which mycobacterium are……and also “mycobacterium culture” which if I understand correctly is cultured differently than everyday sputum cultures.

Also I think part of the situation with GERD and NTM might be as Follows:
I Take a medication that lessens the acid in my stomach…..so NTM in there from drinking water or ice are not affected from an acid stomach environment…..stomach materials back out of stomach…..and are aspirated into lungs. And these materials from the stomach contain NTM which are now in lungs.if there is a suitable environment for them in lungs….they stay and multiply and start causing symptoms.

The above does NOT apply to the NTM that are inhaled directly into the lungs from soil or water sources such as hot tubs or showers.
Katherine or others….does this all sound correct? TerriD

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I just watched the video from the conference in Colorado. Dr. Joseph Falkinham, III, PhD spoke. He researches mycobacteria. You can watch the video but he said boil drinking water for 10 minutes to kill it, turn your water heater to 130 degrees, drain and refill your water heater monthly, remove aerators from your water taps, take your shower head off and immerse it in bleach for 30 minutes every month, don’t use a humidifier – especially not ultrasonic, get a shower head with big holes and don’t use the mist setting and use the bathroom fan or open the window when showering, don’t use the water/ice unit on the outside of your refrigerator, avoid using “wet” potting soil (the kind with peat), don’t use hot tubs or foot baths (they have mist), spring bottled water is best. I learned A LOT and am going to try and do all this and go back on my meds for gastric reflux so I DON’T get NTM infection. Everyone should really watch the video

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Good work, H! Convince them and that may get some American companies attention!

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@ginak

Thank you Terri, I’m going to check those out. I’ll also continue to read through these pages to see if I find anything.
Irene, I’m still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it’s a bacteria that’s “every where” and I’ve read some people were saying hot tubs.
I hate to say I’m glad I’m not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I’m happy to have found a place to talk about it.
Thank you all.
Gina

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@tessie Tessie you are SO right! Not only did your photo look familiar .. but your name looked familiar but I can ONLY claim age .. AND because our wonderful group has become so large .. some months ago I began a ‘list’ of names so that I would NOT miss a newcomer .. but NOW you ‘old timers’ are paying the price as you reappear! So sorry my dear .. so glad you are STILL with us! Keep coming back .. the “the old timers’ are a wealth of hints/knowledge/help for all the newcomers! Again, please accept my apologies!

SO ,, you other ‘old timers’ .. if I do this to you also .. an apology in advance! I’m just doing my best with our wonderfully growing community of MAC folks .. a community that continue to support each other and newcomers .. we will all continue to grown and learn together! Together we get stronger and healthier on this our shared MAC and Bronchiectasis journey! Hugs not only to our ‘old timer’ Tessie but to all our ‘old timers’! Katherine

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@tdrell

Ladies……when we comment about getting a sputum specimin, I believe it should indicate “AFB smear.”acid fast bacillus which mycobacterium are……and also “mycobacterium culture” which if I understand correctly is cultured differently than everyday sputum cultures.

Also I think part of the situation with GERD and NTM might be as Follows:
I Take a medication that lessens the acid in my stomach…..so NTM in there from drinking water or ice are not affected from an acid stomach environment…..stomach materials back out of stomach…..and are aspirated into lungs. And these materials from the stomach contain NTM which are now in lungs.if there is a suitable environment for them in lungs….they stay and multiply and start causing symptoms.

The above does NOT apply to the NTM that are inhaled directly into the lungs from soil or water sources such as hot tubs or showers.
Katherine or others….does this all sound correct? TerriD

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@gaylejean .. Gayle, what GREAT information for our pages! I am going to add the info to my File Cabinet! Do you have a link we can add to our pages .. that could be REALLY helpful! Again, thank you!

One thing I would warn people about .. “take your shower head off and immerse it in bleach for 30 minutes every month” .. personally I tried that. DESTROYED the fake “silver/chrome” coating on my pretty shower head. In doing a LOT of research I found there are almost ZERO all metal shower heads due to the weight .. in fact even the one all metal one I found had a plastic face. So forewarned is forearmed. Research the % bleach versus plastic PRIOR to the process!
Hugs! Katherine

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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It has been a terrible situation. Very long story. However, after my U of L doctor didn't know what to do he was sending me to a ID doctor that never called back to set me up an appointment. After several phone calls and my trying to continuing running our businesses I went to my local family doctor and said could you help me if I gave to you information of dr. and then I could be tested her with you and you could be advised as to what to do next. She said yes to help me I traveled to a conference in Maryland and gave her all the information. She treated me with the same med big 3 for the remainder of 18 months then when it looked like I was all better she took me off. We didn't really know what to do. I thought maybe I should have been tested before I stopped but she said if you don't feel sick just stop so I did and Last November it came back. I have taken advise from this forum and have made appt with Mayo Clinic and have consulted with my local clinic and they said they will support me. However, if I have to go back to Mayo Clinic several times to get better I will. Dr Timothy Aksamit, Md is who I have the appointment with on March 1, 2017. I live in Indiana he is in Minn. but I want to live!! Amen!I so appreciate this group! God Bless everyone. Donna 

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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@donut, Oh Donna, THANK HEAVEN you are FINALLY getting to Dr. Aksamit. TRUST that you are getting to “mecca” … AND to one of the kindest .. loveliest men I have ever encountered .. frankly I just love him .. SO grateful I found him after I was diagnosed with MAC in 2007. You ARE going to LIVE .. KNOW that .. TRUST that .. KNOW that everyone on this Forum will be here for you every step of the way .. you found us .. we will not leave you.

I just CANNOT read “then when it looked like I was all better she took me off” without getting SO angry! Doctors take an oath “DO NO HARM .. that ALSO MEANS .. if you are NOT qualified with ENOUGH knowledge to TREAT A DISEASE .. REFER IT OUT TO SOMEONE WHO IS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It is just unconscionable that she took you off the antibiotics WITHOUT twelve months of negative sputum samples. Sorry but it makes me SOOOO mad! Well off my high horse! Just glad you have an appointment .. you WILL live! Hugs! Katherine

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@katemn

Pam, this is how Colleen said to do it .. hope this helps! Hugs! Katherine

MAYO CLINIC CONNECT-DAILY DIGEST ONLY
Way to change the settings so that you only get the Digest at the end of each day, and/or just get responses to emails you send?”
1. Follow only those groups you are interested in, for example the “MAC & Bronchiectasis” group https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Go to your Account Settings here: https://connect.mayoclinic.org/account/
3. Scroll to Notifications section of the page.
4. Choose the time of day you would like to receive the daily digest.
5. Be sure to tick the box that says “Only include the specific threads and groups this user follows in their digest.”
If you wish to unsubscribe from receiving individual email notices for every post made to a discussion, simply click “Unsubscribe from this discussion thread.” at the bottom of the email.
For more helpful tips on using Connect, see this page https://connect.mayoclinic.org/get-started-on-connect/

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@pamelasc1, Pam, I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the ‘puzzle’ together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON’T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

Jump to this post

Thank you again for your kind support. May God Bless, Donna

REPLY
@tdrell

Ladies……when we comment about getting a sputum specimin, I believe it should indicate “AFB smear.”acid fast bacillus which mycobacterium are……and also “mycobacterium culture” which if I understand correctly is cultured differently than everyday sputum cultures.

Also I think part of the situation with GERD and NTM might be as Follows:
I Take a medication that lessens the acid in my stomach…..so NTM in there from drinking water or ice are not affected from an acid stomach environment…..stomach materials back out of stomach…..and are aspirated into lungs. And these materials from the stomach contain NTM which are now in lungs.if there is a suitable environment for them in lungs….they stay and multiply and start causing symptoms.

The above does NOT apply to the NTM that are inhaled directly into the lungs from soil or water sources such as hot tubs or showers.
Katherine or others….does this all sound correct? TerriD

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I believe the link came from you https://www.nationaljewish.org/ntmvideos2016

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