1. < MAC & Bronchiectasis
Mentor

Hello everyone! What's new with you?

Posted by Terri Martin, Volunteer Mentor @windwalker, Mar 16, 2021

Hello everybody! How is everyone doing? I have missed you guys. As for me, I have been MIA for a spell due to battling a small lung infection in Jan/Feb. I am all better now. What have you guys been up to? I have been working on the interior of my home. Replaced the wall-to-wall carpet with 8" plank vinyl flooring that looks like reclaimed wood. It looks awesome! Repainting the interior all bright white and updating some other things. As you all can imagine, with limited energy, it all takes twice as long to do. Got my 1st covid vaccine shot last week and will get the second one April 1. Yay!!! Have my annual Mayo appt in June. I would love to hear what everyone else has been up to.

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

Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 16, 2021

We have surely missed you Terri - welcome back! Glad to hear you have enough energy to tackle your home projects.
I'll bring you up to date soon - right now I'm on a break from packing to spend a few weeks at our Texas home - excited to finally be getting "on the road again"
Sue

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 17, 2021

@windwalker
Hi Terri, I'm glad that you are feeling better! Welcome back to Connect.

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garry | @garry | Mar 17, 2021

Morning. I have had this mac for 25 years. Fifteen years it took before they knew what it was. I went on the big 3 ,10 years ago. After that I was able to coff up and clear my lungs. I been on azitromycin for the past 5 years off and on as needed. More like a maintenance dose to keep mac at bay. Now it seems like the drug is not working and the mac is in control. I have 2 spots on my lung which are mac.My dr trys his best but he is lost now because there does not seem to be any other anitbotics that work on mac. He put me on Doxycycline fo 14 days. I can tell this not working because i am not able to bring up any flem. I use the 7% salt usually 3 times a day. Is there any other antibiotic that could work on mac? Sorry for the spelling but u get the drift of my story. Just so everyone knows xrays do not show mac. I got one the other day because i swore i had a rock in my long just like phemonia. I must have an xray pile 2 in thick and they say no mac. But the broncho scope and the ct show the mac. Thanks for u al and glad u are back Terri. Garry Canada

REPLY
2 replies
rvan | @rvan | Mar 17, 2021
In reply to @garry "Morning. I have had this mac for 25 years. Fifteen years it took before they knew..." + (show)
@garry

Morning. I have had this mac for 25 years. Fifteen years it took before they knew what it was. I went on the big 3 ,10 years ago. After that I was able to coff up and clear my lungs. I been on azitromycin for the past 5 years off and on as needed. More like a maintenance dose to keep mac at bay. Now it seems like the drug is not working and the mac is in control. I have 2 spots on my lung which are mac.My dr trys his best but he is lost now because there does not seem to be any other anitbotics that work on mac. He put me on Doxycycline fo 14 days. I can tell this not working because i am not able to bring up any flem. I use the 7% salt usually 3 times a day. Is there any other antibiotic that could work on mac? Sorry for the spelling but u get the drift of my story. Just so everyone knows xrays do not show mac. I got one the other day because i swore i had a rock in my long just like phemonia. I must have an xray pile 2 in thick and they say no mac. But the broncho scope and the ct show the mac. Thanks for u al and glad u are back Terri. Garry Canada

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hi Garry - I am curious how old you are ?

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garry | @garry | Mar 17, 2021

Well I feel like 100 but I will be 71 in june

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2 replies
irene5 Irene Estes | @irene5 | Mar 17, 2021
In reply to @garry "Morning. I have had this mac for 25 years. Fifteen years it took before they knew..." + (show)
@garry

Morning. I have had this mac for 25 years. Fifteen years it took before they knew what it was. I went on the big 3 ,10 years ago. After that I was able to coff up and clear my lungs. I been on azitromycin for the past 5 years off and on as needed. More like a maintenance dose to keep mac at bay. Now it seems like the drug is not working and the mac is in control. I have 2 spots on my lung which are mac.My dr trys his best but he is lost now because there does not seem to be any other anitbotics that work on mac. He put me on Doxycycline fo 14 days. I can tell this not working because i am not able to bring up any flem. I use the 7% salt usually 3 times a day. Is there any other antibiotic that could work on mac? Sorry for the spelling but u get the drift of my story. Just so everyone knows xrays do not show mac. I got one the other day because i swore i had a rock in my long just like phemonia. I must have an xray pile 2 in thick and they say no mac. But the broncho scope and the ct show the mac. Thanks for u al and glad u are back Terri. Garry Canada

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@garryAsk your doctor to start you on Arikayce. It is effective against refractive MAC ( MAC that doesn’t respond to other treatments.) @irene5

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nannette | @nannette | Mar 17, 2021

@windwalker Hi Terri! Glad your back! Wondered where you've been and if you're doing OK. Glad to hear your infection is gone and your getting work done on your house. Nan

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garry | @garry | Mar 17, 2021

I mentioned Arikayce to him the other day. Is it a TB drug? He had a reason why he didn't want to use it. They may have to get permission to use a TB drug. I will try again with him. thank u

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3 replies
irene5 Irene Estes | @irene5 | Mar 17, 2021
In reply to @garry "Well I feel like 100 but I will be 71 in june" + (show)
@garry

Well I feel like 100 but I will be 71 in june

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@garry MAC will do that to you! Not funny ha ha, but it did make me smile. I’m growing old waiting to be rid of it! @irene5

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irene5 Irene Estes | @irene5 | Mar 17, 2021
In reply to @garry "I mentioned Arikayce to him the other day. Is it a TB drug? He had a..." + (show)
@garry

I mentioned Arikayce to him the other day. Is it a TB drug? He had a reason why he didn't want to use it. They may have to get permission to use a TB drug. I will try again with him. thank u

Jump to this post

@garry Arikayce is not a TB drug. It is an inhaled medication used for MAC. It requires a doctor to fill out paperwork and follow you closely if you are in a year long trial of it. It is expensive. Mine is covered because I am in a clinical trial. One large node resolved after only three months on it. I have hope and see a light at the end of a very long tunnel because of it. It will be a year on June 8 that I started it. I have had MAC since 2015 and probably earlier but wasn’t diagnosed till 2015. Good luck. @irene5

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