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 | Jul 31, 2016

Kay, who are you asking this question of? Katherine

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1 reply
Kay Strand | @kaystrand | Jul 31, 2016
In reply to @katemn "Kay, who are you asking this question of? Katherine" + (show)
@katemn

Kay, who are you asking this question of? Katherine

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Katherine
I replied to someone and though it would go to them, guess I have to put the name in. They had started meds July 8th. I started yesterday, and am looking for people who have good suggestions. The a Mayo doc said take all 3 in early evening with dinner, except E drug 2 hours after.
Drinking water and will add 1 pill each day till at full dose of all 3

Looking for positive stories on this drug experience and trying to stay very pisitive.

Thanks Katherine. You were able to take them for 18 months it seems? That's good news.

Thanks
Kay

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Katherine, Alumni Mentor | @katemn | Jul 31, 2016

Hello Kay, no actually I took 4 to 5 antibiotics for thirty months and came out just find on the other side! So there is hope! The best way on the meds is to just watch your own body and see how YOU are affected. Play around with it until the timing works for you. For me there were two of the meds that had the side effect of sleep disturbance so I took them first thing after breakfast. Each person needs to watch for their own reaction because we are so individual. Good luck on our shared journey! Hugs to you! Katherine

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1 reply
Kay Strand | @kaystrand | Jul 31, 2016
In reply to @katemn "Hello Kay, no actually I took 4 to 5 antibiotics for thirty months and came out..." + (show)
@katemn

Hello Kay, no actually I took 4 to 5 antibiotics for thirty months and came out just find on the other side! So there is hope! The best way on the meds is to just watch your own body and see how YOU are affected. Play around with it until the timing works for you. For me there were two of the meds that had the side effect of sleep disturbance so I took them first thing after breakfast. Each person needs to watch for their own reaction because we are so individual. Good luck on our shared journey! Hugs to you! Katherine

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Kate
That helps a lot. Might help to know which caused sleep problems? I know we are all different, but I've heard this frequently so suspect they are the same?

Thanks
Kay

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Katherine, Alumni Mentor | @katemn | Jul 31, 2016

Hello Kay, for me the Ethambutol and Avelox seemed to cause the most sleep disturbance then the Rifampin seemed too create "funny feelings" in my legs. Like I said .. all bodies are different .. but this is how my body reacted. Hope this helps! Katherine

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Worried Son | @worriedson | Jul 31, 2016
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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I am a Son of a Vietnam Vet and my hero last year he had back surgery and then came down with Pneumonia then that's where they found a spot ordered a scan in 4 months it had spread into both lungs at a 30 % he has been on three anti for nearly six months and in Oct in no sign of improvement they are gonna stop meds and look at surgery, please help me i am a fourth gen VET and my son now carries the torch in the Marines as a guard on Marine one please don't let this do what a war could not do and that is take my DAD away he was in Nam 3 years, i am a three time deployment VET and a Wounded Warrior, but i would give him a lung to save him. We are in North Carolina near Charlotte.Oh and he's lost 30 Lbs and he dint have that to loose to begin with.

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Katherine, Alumni Mentor | @katemn | Aug 1, 2016
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

Worried Son, you did not say what the diagnosis was. Is it MAI/MAC? If he has lost 30 lbs .. and was on 3 antibiotics .. sound like it could be. If you read previous posts you will see that it is recommended that you DEFINITELY get a second opinion!

I just googled it .. you are not that far from DUKE UNIVERSITY MEDICAL CENTER. Dr. rRichard Frothingham is the principal investigator of a research laboratory which studies Mycobacterium tuberculosis, the cause of tuberculosis, and Mycobacterium avium.
Campus mail: 909 South Lasalle Street, Ghrb Room 1019, Durham, NC 27710

Phone: (919) 684-5455

This is at least a place to get started! I hope this helps you. This Forum is here to help us all on this shared journey .. I know you want so much to help your Dad. I am sending you both a hug! Katherine

https://medschool.duke.edu/about-us/our-faculty/richard-frothingham
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pfists | @pfists | Jan 12, 2017

Do you use water in the diffuser with the oils
I heard that tap water wasnt 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
Worried Son | @worriedson | 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

Jump to this post

Thx so much and yes lung mac also we go to winston on 19th of this month but i am gonna call this Dr tomorrow and sorry took so long to reply lost my bookmarks ???

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

Jump to this post

@worriedson, Hello (do you have a first name) so glad to see you back! Glad you are following up on the MAC! If you have time .. read through past pages of our Forum .. you will find some great ideas on preparing for an appointment with a MAC doctor .. questions to ask .. educating yourself and your Dad on the disease .. all kinds of things. Please let us know how he does! Sending you both a hug! Katherine

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