(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

Hi everyone,
The number of members talking about MAC/MAI/NTM and Bronchiectasis has grown so much that it was time to move the discussions into a group dedicated to MAC & Bronchiectasis. Please visit the new group page here: https://connect.mayoclinic.org/group/mac-bronchiectasis/ and follow the group by clicking + FOLLOW in the corner of the group description.

Everything else will continue to work as it always has. You will continue to get email notifications and connect with the people you know, and welcome new members.
Please let me know if you have any questions.
Colleen

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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@128128terry11t, .. love THAT ‘TerryGerms Be Gone!’ .. IF you’re flying tomorrow .. hope you get it in time! Fly healthy! Hugs! Katherine

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Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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Welcome @melrosedecosmo. I took the liberty of moving your message to the main discussion on MAC where you’ll meet all the “regulars”. I encourage you to click VIEW & REPLY in the email notification and read through some of the past posts to get acquainted with the members. @katemn, the group’s patient mentor, will get you introduced.

In the meantime, Melrose, why don’t you tell us a bit more about yourself?

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Posted by @pfists, 10 hours ago
Do you use water in the diffuser with the oils
I heard that tap water wasn’t safe to put in humidifier/diffuse so wondered if you need to use water with the oil.
I use thieves oil also on bottoms of my feet.
Thanks
Shari

@pfists, Shari, personally I would use distilled water. Research has not ruled out mycobacterium NOT being breathed into our lungs from water .. like from hot tubs. Best to be safe! Hope this helps. Hugs! Katherine

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Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @del .. Del, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7, @jewel8888 .. Julie, @josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @marzz .. , @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pfists .. Shari ,@pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @worriedson, and anyone else I forgot to make note of!

Just a tip:
If you want to get to the VERY LAST POST ON OUR OUR FORUM .. OR TYPE A VERY NEW POST .. NOT A REPLY TO A POST:
1. Wherever you are on the Forum .. go to the VERY END of that particular page
2. At the bottom of the page you will see a square marked “LAST”
3. Hit “Last” .. it will take you to the very END/last page of our Mayo Clinic Connect

Hope your find this helpful! Hugs! Katherine

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Thank you for asking Boomerexpert,

I dont believe ill be able to actually take the trip for both physical and financial reasons. I have insurance but with the many doctors i see here and my disability income alone finances are already tight.

For now i hope its ok i learn from all the caring responses and bring my questions to my providers. I am waiting on a return visit with the director of thoracic surgery at MUSC. He wanted me to restart methotrexate because my skin psoriasis and arthritis have gotten so extreme. He told me the other lung Dr i saw for bronchoscopy said i have a cavitary lesion so waiting until spring is best. Who knows if thats all can be done for now, i will continue to fight and try to get a handle on the infections.

I like the new group it helps me look at topics, better for navigation, and feel more comfotable.

Sincerely,
Julie

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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There is a new generation treatment for Psoriatic Arthritis that does not suppress the immune system! Sounds perfect for you. Wish I could take it by I have regular RA not PA. A dermatologist would know about it…

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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Hello @melrosedecosmo .. (do you have a first name .. makes it so much more personal! .. by the way you are NOT possibly from Melrose MN by any chance?!) Welcome to our Forum .. so glad you found us! I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. Tell us a bit more about YOUR journey .. and please feel free to ask any questions .. OR send us any tips that have helped you along your journey! Sending you a Hug. Katherine

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@jewel8888, Julie .. you just stick with us Kid .. we’ll be here for you every step of the way! You may not be able to get to Mayo .. BUT we will try to help you advocate for yourself the best way we know how! Just keep asking questions .. reading .. educating yourself .. doing your “due diligence” .. you WILL come out on the other side of this thing!! Sending you a hug in this tough time! AND lots of positive energy! Katherine

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Boomer, as we well know .. MANY of our doctors are not always up on things .. do you happen to know the name of the ‘new generation treatment for Psoriatic Arthritis that does not suppress the immune system’? Julie has so many things going on I think it would be helpful for her to have this info. Thanks! Katherine

Liked by jewel8888

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I am in the MAC group but glad this one has opened up also. I am 64, male and have both MAC and Bronchi. The more I read about Bronchi being chronic the more i am concerned it’s going to be with me the rest of my life. Right now a cough and a dip in energy are my biggest symptoms. Both inhibit my enjoying life. But I’m trying to stay positive and hope for the best.
Sincerely, David

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Unfortunately I do not and I did a google search to find it before writing in the hope that I could. She can contact the National Psoriasis Foundation https://www.psoriasis.org/ – sure they’ll know! My docs who do know work 1/2 days on Friday so not in office (yep, FL, where docs go to semi-retire…). I will see if I can get a name for you next week, Julie, but sure you can find it through PA related sites.
Terri

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Katherine – thank you so much for all the tips when travelling.  I will order the Airborne and the Halo. I also wear a mask now once I get to the airport and I keep it on until I arrive. I am so grateful to this group!  Thank you again, Pam   

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Yes look for medications that don’t suppress your immune response.
I have RA also and all my troubles started with the medication I was taking for RA Humira. That started a 6 week pseudomnas pneumonia that developed into bronchialectasis. That was 8 years ago when I quit Humira.
Anyway RA is doing great on the antibiotic Minocycline 3 X a week.
Not sure what medications is used for psoriatic arthritis but hopfully find something that doesn’t suppress your immune system : )
Shari

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