Paragordonae

@karen10225 Wow, everyday we hear something new. Mycobacteria paragordonae was a new one to me, so I looked for info, and here is an article from "Emerging Microbes" 3 years ago:
https://pmc.ncbi.nlm.nih.gov/articles/PMC9364734/
The good news is that it is sensitive to most of the drugs normally used to treat NTM/MAC, and that it is less pathogenic than other unusual strains. I would guess that, as with other unusual strains we seem to be seeing, this has been around for a long time and was just not recognized as unique until they routinely began gene-sequencing various Mycobacteria.

So you can breathe a sigh of relief and wait for the doc to return from vacation.

Thank you Sue. They are doing testing to see what drugs would be effective since I can’t take ethambutol or rifampin. It does seem like there may be safer choices for me. I will see my ID the first week of April and we will discuss possibilities then. I have not treated my simiae with drugs because I have been unwilling to risk the side effects. Now I will really have to decide what choice I want to make!

What do the docs advise? Are you having any positive effects using airway clearance and saline?

I think over time, experienced NTM docs are becoming more accepting of watch and wait, especially if the lungs are stable and/or the symptoms are not getting worse.

I won’t really know what he will suggest until he gets back from vacation. In the meantime it is his nurse practitioner that is having sensitivity tests run. She did ask questions about how I am feeling and if I feel worse. That’s actually a hard question because sometimes I think I feel worse and sometimes I think things are the same.
I just keep doing my nebulizer and try to eat a healthy diet. I walk when I am not too exhausted. I am not great at getting the airway clearance to work for me but I do cough up mucus all day so a lot is coming out.
I think my choice will continue to be watch and wait but I will consider what he has to say.
Thanks for your input. I am feeling lost right now!

I also cough up mucus all day, that in itself tires me out and as well takes a great deal of time. In the beginning I would feel tense after doing airway clearance.
I agree "actually a hard question because sometimes I think I feel worse and sometimes I think things are the same."
I just had an unusual couple of days. Was very achy all over on Wednesday and took Vitamin C, Garlic and Zinc twice from late afternoon to early evening and rested mid afternoon until bedtime. Thursday I felt much better, I was not achy but still not up to par. Friday I brought up a good many mucus plugs and had a bad night waking up to clear my throat every 2 hours until around 3 A.M. and then was able to sleep longer before waking up again and finally up at 8A.M. Today Saturday I feel more up to par. So either I was shaking something else off or I had an exacerbation of some sort. Not quite sure but I guess I have to somewhat assume it was an exacerbation. I really wasn't coughing uncontrollably rather gargling it up and out and sucking it up and out. The amount of sputum and color was as it has been light in color.

I sure understand that feeling of feeling lost. The sad thing is that the feeling of feeling lost comes on for different reasons with our having this chronic illness with an infection(s).
Hope you will have a good weekend.
Barbara

Thank you for your reply and understanding Barbara. I think I mostly feel lost because I read so many different things from people so I get confused about all of it. My two mycobacteriums are very rare and even though my ID doctor is considered one of the best, I believe he isn’t even sure what to do so we wait and watch. I am a very anxious person so this is very hard on me. Not knowing how this will all end if I don’t treat because of my many health conditions makes it even harder. But we don’t have a crystal ball!!
My favorite singer, Mary Chapin Carpenter, has a song called “Between Here and Gone”. That is how I feel all of the time.
Karen

One thing I failed to mention about Friday night and the early hours of Saturday morning...I woke up twice with night sweats. Have not had that happen for years other than when I had a minor illness years back. So I am hoping that I sweat out the infection????????????? I wonder if that is possible.? It appears that today Saturday I have had less need to clear the sputum out, hope it stays that way.
I immediately googled "Between Here and Gone". and found a beautiful YouTube video on Oct. 12, 2010 of it. The song causes one a wide variety of emotions. Thanks for mentioning it. Although I paid some attention to some folk music and know the name Mary Chapin Carpenter I did not know this song. It has much to say and reflect on. I like it and appreciate it more so at this stage in life than I would have in my earlier years. We all grow up to understand more deeply the important things in life with the passing of time and our journeys.
Karen - I can truly understand "That is how I feel all of the time." This journey is not easy in so many ways. Let's just keep on keeping on and be our best advocate as best we can, for that just might be what will get us through this. Hope you, we and all of us eventually have some good changes.
Barbara

I am so glad you liked the song and understood its meaning to me. She has so many songs that help me get through. I had the good fortune of meeting her and was able to express personally how her music in my ear has helped me get through tests and biopsies, etc. for other health issues as well. Music can be so healing and calming.

I liked your advice about keep on keeping on and being our own best advocate. I will find out what is next on my journey when I see my doc in a couple weeks. It will be very important to be my own advocate as I decide what I want to do. It may well differ from what he wants!

Best wishes on your journey. I will be thinking of you.

Karen