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Diagnosed with pseudomonas

Posted by Jennifer @megan123, Nov 18, 2017

Recently diagnosed with pseodomas. Already have bronchiectasis and NTM MAI. This came out of nowhere. In
Good shape, doing everything right, boiling water etc...anyway, scared and sad. Just found out yesterday. Started Cipro 750 mg x2 a day for 2 was. Then another sputum. Need time to wrap my head around this, but
It's so disheartening when u r Dioulasso g everything right, and u still get the pseudo...sucks

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pamelasc | @pamelasc1 | Nov 20, 2017

Hello Megan- I also was diagnosed with pseudemonas after being diagnosed with NTM and bronchiectasis. But for me, dealing with the pseudemonas was a straightforward treatment of one antibiotic (Levaquin) which cleared it up within 2 weeks. That was 2 years ago and it has not come back, thankfully. I got it at the same time I was taking the Big 3 meds for the NTM/MAC ; all of those heavy duty antibiotics could not keep the pseudemonas away!... hard to believe ... just remember that when we have bronchiectasis and NTM, our bodies / lungs are just that much more susceptible to other bacteria which we have little control over. I hope, like me, the pseudemonas will clear up for you within 2 weeks. I am now 68 and was diagnosed with NTM 3 years ago after coughing for years and getting pneumonia 2 or 3 times a year. For more than 10 years, I was told I had asthma which is discouraging at best, as had my doctor diagnosed me correctly, with NTM years ago,,my lungs would be a lot healthier. Good luck to you, Pam

REPLY
2 replies
auntnanny | @auntnanny | Nov 20, 2017

I have bronchiectasis and was finally diagnosed at Mayo's in Rochester two years ago. I'm 76 and like Pam -- had been told by several doctors it was asthma. I never believed the asthma diagnosis as I had no difficulty breathing ---- but the cough was about to kill me over the years. It was horrible. You know....... I saw several specialists and none of them ever did a sputum test. It is very discouraging when you think that perhaps you could have been treated sooner. I wonder why this can't be diagnosed by so many "doctors". I have had pseudemonas two/three times. Mayo has given me Cipro for it and it alleviates the problem....... but it does come back. Would love to be free of it for two years. Thanks for what you shared. Jan

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2017

Hi @megan123, you might like to review this discussion in the MAC group:
- Have Bronchiectasis, recently diagnosed with pseumonas https://connect.mayoclinic.org/discussion/have-bronchiectasis-recently-diagnosed-with-pseumonas/

REPLY
Jennifer | @megan123 | Nov 20, 2017
In reply to @pamelasc1 "Hello Megan- I also was diagnosed with pseudemonas after being diagnosed with NTM and bronchiectasis. But..." + (show)
@pamelasc1

Hello Megan- I also was diagnosed with pseudemonas after being diagnosed with NTM and bronchiectasis. But for me, dealing with the pseudemonas was a straightforward treatment of one antibiotic (Levaquin) which cleared it up within 2 weeks. That was 2 years ago and it has not come back, thankfully. I got it at the same time I was taking the Big 3 meds for the NTM/MAC ; all of those heavy duty antibiotics could not keep the pseudemonas away!... hard to believe ... just remember that when we have bronchiectasis and NTM, our bodies / lungs are just that much more susceptible to other bacteria which we have little control over. I hope, like me, the pseudemonas will clear up for you within 2 weeks. I am now 68 and was diagnosed with NTM 3 years ago after coughing for years and getting pneumonia 2 or 3 times a year. For more than 10 years, I was told I had asthma which is discouraging at best, as had my doctor diagnosed me correctly, with NTM years ago,,my lungs would be a lot healthier. Good luck to you, Pam

Jump to this post

Thank you so much for replying. Needed to hear that. It just scares me how I got it. Doing
Everything right, and u still get it. I know my lungs r weakened but it's scarey when u get pseudo....don't want that one....✌️

REPLY
Jennifer | @megan123 | Nov 20, 2017
In reply to @auntnanny "I have bronchiectasis and was finally diagnosed at Mayo's in Rochester two years ago. I'm 76..." + (show)
@auntnanny

I have bronchiectasis and was finally diagnosed at Mayo's in Rochester two years ago. I'm 76 and like Pam -- had been told by several doctors it was asthma. I never believed the asthma diagnosis as I had no difficulty breathing ---- but the cough was about to kill me over the years. It was horrible. You know....... I saw several specialists and none of them ever did a sputum test. It is very discouraging when you think that perhaps you could have been treated sooner. I wonder why this can't be diagnosed by so many "doctors". I have had pseudemonas two/three times. Mayo has given me Cipro for it and it alleviates the problem....... but it does come back. Would love to be free of it for two years. Thanks for what you shared. Jan

Jump to this post

Thanks for your reply....gives me some hope✌️

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 21, 2017

@megan123, HI Jennifer, I have the exact same story as you. I freaked out when I learned I had pseudomonas too. I had it a year ago, I was put on tobramycin for it. It was gone by the end of the month. Fortunately, it is easier to get rid of than most bacteriums. I am on monthly antibiotics for life as a prophylaxis to keep me from developing full blown infections. I don't know for sure if it is the right thing to do, but I am following my doctor's recommendation from the Mayo Clinic.

REPLY
1 reply
Jennifer | @megan123 | Nov 22, 2017
In reply to @windwalker "@megan123, HI Jennifer, I have the exact same story as you. I freaked out when I..." + (show)
@windwalker

@megan123, HI Jennifer, I have the exact same story as you. I freaked out when I learned I had pseudomonas too. I had it a year ago, I was put on tobramycin for it. It was gone by the end of the month. Fortunately, it is easier to get rid of than most bacteriums. I am on monthly antibiotics for life as a prophylaxis to keep me from developing full blown infections. I don't know for sure if it is the right thing to do, but I am following my doctor's recommendation from the Mayo Clinic.

Jump to this post

It's so crazy that we r dealing with any of this..... u r amazing. With everything you are dealing with, you still find time to help...I think we are all true warriors...✌️

REPLY
macspouse | @macspouse | Nov 22, 2017

Well said. Happy Thanksgiving to the warriors.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 23, 2017
In reply to @pamelasc1 "Hello Megan- I also was diagnosed with pseudemonas after being diagnosed with NTM and bronchiectasis. But..." + (show)
@pamelasc1

Hello Megan- I also was diagnosed with pseudemonas after being diagnosed with NTM and bronchiectasis. But for me, dealing with the pseudemonas was a straightforward treatment of one antibiotic (Levaquin) which cleared it up within 2 weeks. That was 2 years ago and it has not come back, thankfully. I got it at the same time I was taking the Big 3 meds for the NTM/MAC ; all of those heavy duty antibiotics could not keep the pseudemonas away!... hard to believe ... just remember that when we have bronchiectasis and NTM, our bodies / lungs are just that much more susceptible to other bacteria which we have little control over. I hope, like me, the pseudemonas will clear up for you within 2 weeks. I am now 68 and was diagnosed with NTM 3 years ago after coughing for years and getting pneumonia 2 or 3 times a year. For more than 10 years, I was told I had asthma which is discouraging at best, as had my doctor diagnosed me correctly, with NTM years ago,,my lungs would be a lot healthier. Good luck to you, Pam

Jump to this post

@pamelasc1, Hi Pam. I am so glad that you worded this the way that you did, because it is proof that certain antibiotics will work on certain bacteriums. This drives home the point of how important it is to get SPUTEM samples people, so that you and your doctor knows what exactly it is you are battling and can get the proper medication for it.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 23, 2017
In reply to @auntnanny "I have bronchiectasis and was finally diagnosed at Mayo's in Rochester two years ago. I'm 76..." + (show)
@auntnanny

I have bronchiectasis and was finally diagnosed at Mayo's in Rochester two years ago. I'm 76 and like Pam -- had been told by several doctors it was asthma. I never believed the asthma diagnosis as I had no difficulty breathing ---- but the cough was about to kill me over the years. It was horrible. You know....... I saw several specialists and none of them ever did a sputum test. It is very discouraging when you think that perhaps you could have been treated sooner. I wonder why this can't be diagnosed by so many "doctors". I have had pseudemonas two/three times. Mayo has given me Cipro for it and it alleviates the problem....... but it does come back. Would love to be free of it for two years. Thanks for what you shared. Jan

Jump to this post

@auntnanny. Hi Jan. Happy Thanksgiving! Please keep us posted on how long you go Pseudo free.

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