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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.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 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

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Hi Garry. Another inhaled medication that works on MAC is tobramycin. Some drs will say it only works on pseudomonas infections, but the Mayo drs have found that it can fight mac as well. It too is crazy expensive. I had the Healthwell Foundation pay for my co-pays. They are a charitable organization that helps in certain circumstances.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 17, 2021
In reply to @goddard "Azithromycin has anti-inflammatory properties as well as antibacterial. The doc thought the success was because of..." + (show)
@goddard

Azithromycin has anti-inflammatory properties as well as antibacterial. The doc thought the success was because of the anti-inflammatory effect --I called outside expert and they said same thing. in 5 days I felt so much better, cough went back to normal range. -- I had susceptibility tests a couple years ago, when I had positive MAC culture-- I cut and pasted this from the report, but the lines went nuts when I tried to copy it, so I hope I put TS and TR in right place. I hope I didnt screw it up. However, since then Ie had a negative test-- which I need to get repeated.
1_Rifampin (RIF) <=0.5 TS
2_Ethambutol (EMB) S TI
3_EMB/RIF Combo Effect SYN D1
4_Rifampin (Combo Assay) 5_Ethambutol (Combo Assay) <=0.12 TS
5. Ethambutol. Combo Assay <=1.25. TS
Amikacin. 16 TR
Ciprofloxacin. 8 TR
Clarithromycin. 0.25 TS
Clofazimine <=0.12 TS D2
Linezolid. 8 TS
Moxifloxacin. 2 TI
Rifabutin. <=0.25 TS
Streptomycin. 32. TR.

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Hi Granny. I see your mac is resistant to the cipro and the streptomycin. The Linezolid might be promising. I had read good things about that drug. Let me know the results of your next sputem test. Hoping for another negative result.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 22, 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, I know the feeling! I am working on trying to change that.

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