1. < MAC & Bronchiectasis

Stenotrophomonas added to my diagnosis

Posted by franthony @franthony, Jan 12, 2020

My doc just added stenotrophomonas to my growing list of lung infections. My MAC results have been coming back negative for a few weeks now, pseudomonas seem calm, but my aspergillus can't be treated while I'm being treated for MAC, This is a never ending thing, I guess. Does anybody else have stenotrophomonasy? This is so frustrating!

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

irene5 Irene Estes | @irene5 | May 9, 2020

@fdixon63 Good luck. I think you’ll be ok on the miniocycline. Some people take the Big 3 and do well. Others like you and me struggle with them. Irene

REPLY
toni1132 | @toni1132 | May 11, 2020
In reply to @fdixon63 "Hi @franthony. Thanks for sharing your experience. When I first found out about the stenotrophomonas yesterday..." + (show)
@fdixon63

Hi @franthony. Thanks for sharing your experience. When I first found out about the stenotrophomonas yesterday I was a bit down and had a little "pity party." After that I had a talk with myself, prayed to my God, got encouragement from my best friend, felt the support from my husband and renewed confidence in my doctors that they know what they are doing. I pray for you that you will get some good news soon. Knowing we're not alone with these diseases is some comfort. I've learned so much. God bless you. Faye

Jump to this post

Blessings on YOU ! What a wonderful outlook! You are so right. We all have to keep a positive mindset. Prayers, friends, loved ones, medical intervention, all this is there for us and we all need to remembers that it is and we need to utilize all of these options and sources. I truly wish you well !

REPLY
2 replies
fdixon63 | @fdixon63 | May 11, 2020
In reply to @toni1132 "Blessings on YOU ! What a wonderful outlook! You are so right. We all have to..." + (show)
@toni1132

Blessings on YOU ! What a wonderful outlook! You are so right. We all have to keep a positive mindset. Prayers, friends, loved ones, medical intervention, all this is there for us and we all need to remembers that it is and we need to utilize all of these options and sources. I truly wish you well !

Jump to this post

Thank you @toni1132. I never knew words from perfect strangers could be so warming. But I say this, "A stranger is just a friend you haven't met yet. Feeling the love from the group.

REPLY
Jane S. Brown | @macjane | May 12, 2020

Very nice saying.

REPLY
Jane S. Brown | @macjane | May 12, 2020
In reply to @toni1132 "Blessings on YOU ! What a wonderful outlook! You are so right. We all have to..." + (show)
@toni1132

Blessings on YOU ! What a wonderful outlook! You are so right. We all have to keep a positive mindset. Prayers, friends, loved ones, medical intervention, all this is there for us and we all need to remembers that it is and we need to utilize all of these options and sources. I truly wish you well !

Jump to this post

How nice what you have said.

REPLY
1fancydancer | @1fancydancer | Jun 19 3:28pm

I do. First time I have had it.

REPLY
1fancydancer | @1fancydancer | Jun 21 12:28pm
In reply to @fdixon63 "Hi everyone. Need to hear some experiences with this Stenotrophomonas "bug." I had just finished 28..." + (show)
@fdixon63

Hi everyone. Need to hear some experiences with this Stenotrophomonas "bug." I had just finished 28 days of Tobramycin (for Pseudomonas) and submitted a sputum. Now they say I've grown this. I've had Pseudomonas 3 times in a 13-14 month span. A little over a year ago when I was diagnosed with MAC and Bronchiectasis, I also had Pseudomonous. Last fall had a PICC line and Tobramycin which tests said it cleared it up. So then a 3-4 months later tested positive again for Pseudomonous, but not as bad as in the fall. I submitted a sputum last week and now they say I'm growing Stenotrophomonas. I can't recall ever hearing about it but there are so many things on the "connect" group I could have overlooked. They have prescribed 21 days of oral antibiotic called Minocycline. I don't do well on most antibiotics and had to be taken off the "big 3" after 6 weeks so don't know what to expect with this one. Whatever knowledge or experiences you can share is appreciated. Thanks and God Bless Us All.

Jump to this post

I have it now too. Taking Minocycline for 10 days. 100 mg. After the first pill I could breath better. However, it is effecting my blood sugar. Blood sugar going low. Talked to DR. Said take it anyway and do what I have to do to keep my blood sugar up enough to keep from passing out.
Eating protein and ice cream every 2 hours. I ought to be nice and fat after this is over.

REPLY
sadies1mom | @sadies1mom | Jun 22 8:27pm

Do you get this testing through sputum or a bronchoscopy?

REPLY
sadies1mom | @sadies1mom | Jun 22 8:42pm
In reply to @franthony "Well, now I have added penicillium to the mix. This is infection number five in two..." + (show)
@franthony

Well, now I have added penicillium to the mix. This is infection number five in two years. It is a little depressing. Stenotrophomonas susceptibility tests still running. Meanwhile, I'm in month 20 of MAC treatment, have been treated for pseudomonas three times, and can't be treated for the aspergillus while being treated for the MAC. Sheesh!

Jump to this post

It's true that it's rotten luck. But, there are worse diseases. I remember when my first CT scan was read, it looked like lung cancer and "likely metastatic disease." Now that was completely devastating. Of course the pathology revealed MAC/bronchiectasis and pseudomonas.
Something I don't forget also is my ID doctor's response when I asked how many people she thought may have this and not know it. Her reply was, " A lot!!"

REPLY
View MoreView Less
Please sign in or register to post a reply.