1. < MAC & Bronchiectasis

MAC - Get a second opinion!

Posted by digmeme @digmeme, Jun 29, 2016

I was diagnosed by a pulmonologist in January of this year with MAC. I have written before about the 3 meds most of you are on that have this......I suffered and suffered with ALL of them....nausea, chills, leg cramps, night sweats and sometimes in bed 20 hours with 5 layers of clothing and 7 blankets over me!
About a month ago I went to see an Infectious Disease specialist and he took me off ALL meds, did a CAT scan.....AND today I got the results! Only one nodule in my lung and will not need to be checked for 12-18 months and I will not have to take ANY meds.....NONE! Folks, this is the power of lots of prayers and Him guiding me to a great doctor.!!!!! Thank you Lord! I also use "Thieves" essential oil from bulk apothecary.com in a $20 Walmart diffuser every night! I have felt better this past month than I have in a year! DO NOT SUFFER......get a second opinion!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Katherine, Alumni Mentor | @katemn | Jan 13, 2017

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

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13, 2017
In reply to @colleenyoung "@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm..." + (show)
@colleenyoung

@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband's story. They each have a lot of experience navigating the health care system and MAC.

You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63

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@worriedson - Here's how to find your bookmarks

1. Click your @username (@worriedson). This will take you to your profile page.
2. Click "My Bookmarks" in the right hand column.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 13, 2017
In reply to @colleenyoung "@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm..." + (show)
@colleenyoung

@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband's story. They each have a lot of experience navigating the health care system and MAC.

You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63

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Colleen, you are such a smart cookie .. thanks for jumping in! We are lucky to have you as a resource! Katherine

REPLY
Worried Son | @worriedson | Jan 14, 2017
In reply to @colleenyoung "@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm..." + (show)
@colleenyoung

@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband's story. They each have a lot of experience navigating the health care system and MAC.

You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63

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Yes Ma'am it's Terry.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 15, 2017
In reply to @colleenyoung "@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm..." + (show)
@colleenyoung

@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband's story. They each have a lot of experience navigating the health care system and MAC.

You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63

Jump to this post

@worriedson, Hi Terry, any news on your Dad .. I've been thinking of him. He is so lucky to have you as a son! Hugs to you both! Katherine

REPLY
Worried Son | @worriedson | Jan 15, 2017
In reply to @colleenyoung "@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm..." + (show)
@colleenyoung

@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband's story. They each have a lot of experience navigating the health care system and MAC.

You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63

Jump to this post

thank you we have a appointment in Winston on 20th with the VA but i am contacting the Dr at Duke tomorrow.

REPLY
Worried Son | @worriedson | Jan 15, 2017
In reply to @colleenyoung "@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm..." + (show)
@colleenyoung

@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband's story. They each have a lot of experience navigating the health care system and MAC.

You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63

Jump to this post

these are my Dad and myself and our cars last year at run to the sun in Myrtle Beach SC since he has been sick and lost weight as you can tell he didnt have to loose now he cant walk any with out being out of breath

REPLY
Katherine, Alumni Mentor | @katemn | Jan 15, 2017
In reply to @colleenyoung "@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm..." + (show)
@colleenyoung

@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband's story. They each have a lot of experience navigating the health care system and MAC.

You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63

Jump to this post

@worriedson, Terry, I am SO glad you are taking charge .. being a GREAT advocate for your Dad .. and best of all contacting Duke .. I think if you can get him into there that will be your best bet. Sorry to say it ..but the VA is SO overworked. Keep us posted! Hugs to you botth! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 15, 2017
In reply to @donnavm "Thank you Coleen. We are in California. I will check links. I'm truly shaking through all..." + (show)
@donnavm

Thank you Coleen.
We are in California. I will check links. I'm truly shaking through all of this. I have panic disorder so it's tough.
I'm so grateful I found this place to talk.

Jump to this post

@donnavm Donna we are here for you .. keep coming back to our Forum .. we have all walked this journey. Hugs to you! Katherine

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