(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

@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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Linda – this is great to learn about – thank you – I will order it! 
Pam

 

REPLY
@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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I have not had any side affects with the Symbicort – it is just that
Katherine mentioned that these inhalers should help us cough up the sputum, and
the Symbicort does not make me cough – so I just wonder if some of the others
might be more beneficial.  Pam

 

REPLY
@katemn

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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@lindam272, Linda, thank you for jumping in. I think you are RIGHT ON!! We need to remember the theory of mycobacterium being ‘”aerosolizing’ in showers/hot tubs etc. So it certainly would also be true for humidifiers and diffusers. Thanks for pointing this out! SO important! The ONLY time we should be using liquid into our lungs would be doctor prescribed with a nebulizer/medicine/saline! Hugs! Katherine

REPLY
@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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@lindam272, Linda and @pamelasc1, Pam , just a heads up on the ‘Ionic Personal Air Purifier called the Minimate when I fly.’

I have used it for years BUT it is actually illegal on an airplane now days due to the battery. SO what I do .. I always wear a jacket when I fly .. because I am always cold .. SO I carefully tuck it into the left side of my jacket with just the air end sticking out. THEN it depends on IF the Flight Attendant is really vigilant OR mean! By being careful .. only ONCE has an Attendant DEMANDED that I remove my unit. She brought out her hefty Rules Manual! So be careful in your use .. because with it I have been really lucky not to pick up viruses on airplanes! Hugs! Katherine

REPLY
@katemn

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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speaking of hot tubs; has anyone out there looked into wearing a vapor mask
when using a hot tub?  I ask because I have put my hot tub to bed for the
time being, on the advice of my doctor. But I would like to think I could use it
again due to a bad back.  I know it would be strange to climb into a hot
tub with a rather scary looking mask on, but I would do it, if I knew it was
giving me some protection from the vapors.   I did have the water
tested just before I emptied it, and it came back positive for pseudemones, but
did not show signs of MAC ( and I had pseudemones at one point, so I could have
very well gotten it from the hot tub.    Pam

 

REPLY
@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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Thanks @lindam272,Linda, all these ideas really help us all! Our bodies and reactions are so different! Personally the first time I was given Albuterol it triggered a horrid migraine so I just can’t use it. Because of those nasty migraines I also tried but had to STOP due to migraine triggering: Xopenex HFA, Advair, Pulmicort 200 mcg, Asmanex 220!

So I was delighted when I finally found no issues with my current Qvar and Atrovent.

Again, thanks for sharing what works for you .. that is what our community is all about! Hugs! Katherine

REPLY
@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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how did you get it through security?  I will still buy it!

 

REPLY
@katemn

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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@pamelasc1, Pam, I feel strongly this is a question for your Pulmonologist .. BECAUSE even when you are ‘stable’ .. off the antibiotic treatment .. the mycobacterium is STILL in your lungs .. just not growing/colonizing. ALSO you can STILL get ANOTHER mycobacterium OTHER THAN what you presently have! When I was first diagnosed I refused treatment because I did not have access to the wisdom .. education .. support of a Forum such as thing .. thus I delayed treatment UNTIL I was diagnosed with a SECOND SERIOUS ABCESSUSS type of mycobacterium that was even more difficult to treat!

So, Pam .. just based on my personal experience .. it scares me to death that you might even take a chance on a hot tub at a later date without consultation with your Pulmonologist. This MAC is nothing to be messed with. Personally I found a Back Clinic in my city that taught me various back exercises that strengthened my back and core muscles to the point that IF I do them regularly .. using the back machine they recommended (you need training on it!) .. I can keep the back pain within reason. I do NOT know your back issues .. but I just hope you seek out whatever help you need! Hugs to you! Katherine

WITH PROPER TRAINING:
This is the machine I use .. no longer on Amazon .. but gives you an idea and reviews: Stamina Ab / Hyper Bench
http://www.staminaproducts.com/product_detail.cfm?cat=Strength&pid=20-2021https://www.amazon.com/Stamina-20-2020B-Ab-Hyper-Bench/dp/B000JC1S0U

Liked by jewel8888

REPLY
@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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@pamelasc1 Pam, we have ‘Trusted Traveler/Global Entry’ status .. but even so I think if you just put it in your carry on .. no problem. I always carry an extra battery in a little velvet bag. Actually I also have one in my purse for theatre .. autos .. restaurants .. as well as an extra for travel! Can’t be without one! Hugs! Katherine

REPLY

I too have lower back pain since being diagnosed with MAC/bronchiectasis. I initially thought all the coughing might have triggered it. Now I am on the triple 3 and don’t cough much but still have lower back pain. I thought maybe the pressure of the Vest on my back might be causing it. I have an InCourage Machine and spoke to the technical team and they said they have not had a similar concern but suggested I reduce the vibrational frequency and decrease the time spent on the machine from 30 to 20 minutes. Yet, that is not sufficient to help clear out my lungs.. ..

I am not sure though that the back pain has anything to do with the VEST. If anybody has had similar problems and could offer some advice I would appreciate it.

REPLY
@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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I had it in my purse and put it on once I was seated in the airport waiting to board. No one ever questioned it.

REPLY
@katemn

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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Very happy to see others questioning the use of hot tobs. My pulmonologist told me (well my ten year old stepson) it was ok for us to go swimming a bit. Not the ocean but the pool where i know the chemicals are right. Fortynately i have access to a resort where ill be able to go again soon. But with your reply ill make sure to discuss it again given i didnt mention to lung surgeon and skin issues. Better to be safe.

I sure hope they say ok it makes ne feel so much better.

REPLY
@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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..ONLY on the airplane will you be questioned. Katherine

Liked by lindam272

REPLY
@katemn

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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Everyone one has been very honest and caring about their advice in NOT using my hot tub… unless I know I can wear a high quality vapor mask AND get an ok from my doctor, I will avoid it.  Thank you so much, Pam  

REPLY
@katemn

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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@jewel8888, would LOVE it if you share with us the information your doctor gives you re the hot tubs. The more info we share the better .. that is what our community is all about! Hugs! Katherine

Liked by jewel8888

REPLY
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