Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by shiell @shiell, Feb 25, 2017

I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

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@sueinmn

What you want to ask for is probably an infectious disease (ID) specialist. This is it's own specialty, but in many areas, an internist, pulmonologist or other doc will pick it up as a sub-specialty.
You own pulmonologist can also send your specimens to National Jewish Health in Denver, then telephone consult with someone there to work out your plan. (That is what my own ID & pulmonologist in Minnesota did when they were unsure of what to do next with my infection.)
Sue

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Sue, will the NJH lab accept your sputum sample and consult with your doctors even if you are not an NJH patient? My lab does not so colony counts and I would like to send my sputum sample there. I am also trying to get a n appointment with NJH. Did you ever go there?
Lora Jo

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@ljfoo

Sue, will the NJH lab accept your sputum sample and consult with your doctors even if you are not an NJH patient? My lab does not so colony counts and I would like to send my sputum sample there. I am also trying to get a n appointment with NJH. Did you ever go there?
Lora Jo

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Your physician can arrange this. In my clinic, the sample goes first to the department of health for initial AFB testing (I live in a high TB area, and this rules out tuberculosis) then to NJH for completion - culture grow-out, colony counts and sensitivity testing.
My pulmonologist says there are just a few labs who do this.
Sue

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@sueinmn

Your physician can arrange this. In my clinic, the sample goes first to the department of health for initial AFB testing (I live in a high TB area, and this rules out tuberculosis) then to NJH for completion - culture grow-out, colony counts and sensitivity testing.
My pulmonologist says there are just a few labs who do this.
Sue

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Thanks,Sue

REPLY

A comment on Pseudemonas - Hello everyone. This is Pam who has been asking a lot of questions about how to get rid of Pseudemonas. Sue, Teri, Aunt Nanny, and others have offered me a lot of good information and it eventually becomes a matter of juggling all of the well articulated experiences of many of you, then weighing it all and deciding what you feel will work best for you. This is my third bout of pseud. : the first one was in 2015, the second one in 2019 and now again... so not a constant, but enough! Each time I took 10 days of Levaquin and it knocked it out 100%. But because I now have nerve pain in my feet and toes ( possibly from the many times I have taken Levaquin over the last 6 years, not only for pseudemonas, but for bouts of pneumonia) and because Levaquin has been known to cause this, I decided not to take it ever again, if possible. So after weighing all my options, I have decided to take the inhaled Tobrymycin, 30 days on, 30 days off, 30 days on, etc. I began today. My biggest fear was experiencing what Sue experienced, which was suddenly, after using the Toby for two or so weeks, in one session, she could not breathe. She had no rescue inhaler and she had to wait it out for some minutes (which must have been frightening!) calm herself, and finally her breathe came back. This is what scared me the most and I asked the pharmacist what I could do to prevent this. She told me to use my inhaler just before taking the Toby, and that this would open up my airway to make the Toby enter more efficiently and without mishap. My inhaler, from which I take two puffs, twice a day, is Breztri. It is for maintenance and it is a combination of Symbicort and Incruse, but it also has some albuterol, which is what helps when taking the Toby. So I am off "to the races" with this stuff, for the first time, and I will report back at some point as to how it is all going. My current case of psedemonas has been a bad one; I don't feel well, I am tired and I cough constantly, with a lot coming up. Thank you, all of you, for your wonderful support! Pam

REPLY
@pamelasc1

A comment on Pseudemonas - Hello everyone. This is Pam who has been asking a lot of questions about how to get rid of Pseudemonas. Sue, Teri, Aunt Nanny, and others have offered me a lot of good information and it eventually becomes a matter of juggling all of the well articulated experiences of many of you, then weighing it all and deciding what you feel will work best for you. This is my third bout of pseud. : the first one was in 2015, the second one in 2019 and now again... so not a constant, but enough! Each time I took 10 days of Levaquin and it knocked it out 100%. But because I now have nerve pain in my feet and toes ( possibly from the many times I have taken Levaquin over the last 6 years, not only for pseudemonas, but for bouts of pneumonia) and because Levaquin has been known to cause this, I decided not to take it ever again, if possible. So after weighing all my options, I have decided to take the inhaled Tobrymycin, 30 days on, 30 days off, 30 days on, etc. I began today. My biggest fear was experiencing what Sue experienced, which was suddenly, after using the Toby for two or so weeks, in one session, she could not breathe. She had no rescue inhaler and she had to wait it out for some minutes (which must have been frightening!) calm herself, and finally her breathe came back. This is what scared me the most and I asked the pharmacist what I could do to prevent this. She told me to use my inhaler just before taking the Toby, and that this would open up my airway to make the Toby enter more efficiently and without mishap. My inhaler, from which I take two puffs, twice a day, is Breztri. It is for maintenance and it is a combination of Symbicort and Incruse, but it also has some albuterol, which is what helps when taking the Toby. So I am off "to the races" with this stuff, for the first time, and I will report back at some point as to how it is all going. My current case of psedemonas has been a bad one; I don't feel well, I am tired and I cough constantly, with a lot coming up. Thank you, all of you, for your wonderful support! Pam

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And PS - Medicare and Blue Cross Blue Shield, Med X, my supplemental, is covering the cost of the Tobrymycin at 100%.

REPLY
@pamelasc1

A comment on Pseudemonas - Hello everyone. This is Pam who has been asking a lot of questions about how to get rid of Pseudemonas. Sue, Teri, Aunt Nanny, and others have offered me a lot of good information and it eventually becomes a matter of juggling all of the well articulated experiences of many of you, then weighing it all and deciding what you feel will work best for you. This is my third bout of pseud. : the first one was in 2015, the second one in 2019 and now again... so not a constant, but enough! Each time I took 10 days of Levaquin and it knocked it out 100%. But because I now have nerve pain in my feet and toes ( possibly from the many times I have taken Levaquin over the last 6 years, not only for pseudemonas, but for bouts of pneumonia) and because Levaquin has been known to cause this, I decided not to take it ever again, if possible. So after weighing all my options, I have decided to take the inhaled Tobrymycin, 30 days on, 30 days off, 30 days on, etc. I began today. My biggest fear was experiencing what Sue experienced, which was suddenly, after using the Toby for two or so weeks, in one session, she could not breathe. She had no rescue inhaler and she had to wait it out for some minutes (which must have been frightening!) calm herself, and finally her breathe came back. This is what scared me the most and I asked the pharmacist what I could do to prevent this. She told me to use my inhaler just before taking the Toby, and that this would open up my airway to make the Toby enter more efficiently and without mishap. My inhaler, from which I take two puffs, twice a day, is Breztri. It is for maintenance and it is a combination of Symbicort and Incruse, but it also has some albuterol, which is what helps when taking the Toby. So I am off "to the races" with this stuff, for the first time, and I will report back at some point as to how it is all going. My current case of psedemonas has been a bad one; I don't feel well, I am tired and I cough constantly, with a lot coming up. Thank you, all of you, for your wonderful support! Pam

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Hi Pam. Thanks for posting your experience with pseudomonas treatment. I have a nasty case of it and I couldn't tolerate the inhaled gentomicin my doctor prescribed. My lungs are very fragile with several bad diseases and they do not like anything except air breathed into them. I'm having terrible shortness of breath which has kept me home almost 24/7 for months. I believe it is the pseudomonas causing this along with huge amounts of sputum.

I'm sorry you had such a scary reaction to Levaquin. Do I understand that you took it for a total of 20 days over several years? I plan to ask my doctor about it when I see her at the end of the year. If it knocks out the pseudomonas in 10 days it would be a miracle for me.

REPLY
@rits

Hi Pam. Thanks for posting your experience with pseudomonas treatment. I have a nasty case of it and I couldn't tolerate the inhaled gentomicin my doctor prescribed. My lungs are very fragile with several bad diseases and they do not like anything except air breathed into them. I'm having terrible shortness of breath which has kept me home almost 24/7 for months. I believe it is the pseudomonas causing this along with huge amounts of sputum.

I'm sorry you had such a scary reaction to Levaquin. Do I understand that you took it for a total of 20 days over several years? I plan to ask my doctor about it when I see her at the end of the year. If it knocks out the pseudomonas in 10 days it would be a miracle for me.

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Pam I meant taken it for a total of 20 days for pseudomonas. I understand that you also took it for pneumonia through the years.

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@rits

Pam I meant taken it for a total of 20 days for pseudomonas. I understand that you also took it for pneumonia through the years.

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Hello Rits - The levaquin always knocked out the pseudemonas, and I wish I could keep taking it, for when I need it. But the side affect of the numbness and tingling in my feet and toes, which came on, many months after my last round of Levaquin, is real and ongoing, so I just do not want to take the chance of having that get any worse. Many people can take the levaquin without side affects. When I had pseudemonas, I only had to take levaquin for 10 days - that was enough for it to knock the pseudemonas out. Good luck, Pam

REPLY
@rits

Hi Pam. Thanks for posting your experience with pseudomonas treatment. I have a nasty case of it and I couldn't tolerate the inhaled gentomicin my doctor prescribed. My lungs are very fragile with several bad diseases and they do not like anything except air breathed into them. I'm having terrible shortness of breath which has kept me home almost 24/7 for months. I believe it is the pseudomonas causing this along with huge amounts of sputum.

I'm sorry you had such a scary reaction to Levaquin. Do I understand that you took it for a total of 20 days over several years? I plan to ask my doctor about it when I see her at the end of the year. If it knocks out the pseudomonas in 10 days it would be a miracle for me.

Jump to this post

Hi Rits..Cipro and Levaquin are usually tried before nebulized drugs..Nebulized Colistin has been a life savour..I’m not sure I would wait till the end of the year to try Levaquin..Pseudo is a nasty bacteria..Low density CT scans at least yearly, and regular sputum samples should be done at least twice a year..airway clearance, Aerobika, snd 7 percent nebulized saline x2 a day is huge for me..💕

REPLY
@pamelasc1

A comment on Pseudemonas - Hello everyone. This is Pam who has been asking a lot of questions about how to get rid of Pseudemonas. Sue, Teri, Aunt Nanny, and others have offered me a lot of good information and it eventually becomes a matter of juggling all of the well articulated experiences of many of you, then weighing it all and deciding what you feel will work best for you. This is my third bout of pseud. : the first one was in 2015, the second one in 2019 and now again... so not a constant, but enough! Each time I took 10 days of Levaquin and it knocked it out 100%. But because I now have nerve pain in my feet and toes ( possibly from the many times I have taken Levaquin over the last 6 years, not only for pseudemonas, but for bouts of pneumonia) and because Levaquin has been known to cause this, I decided not to take it ever again, if possible. So after weighing all my options, I have decided to take the inhaled Tobrymycin, 30 days on, 30 days off, 30 days on, etc. I began today. My biggest fear was experiencing what Sue experienced, which was suddenly, after using the Toby for two or so weeks, in one session, she could not breathe. She had no rescue inhaler and she had to wait it out for some minutes (which must have been frightening!) calm herself, and finally her breathe came back. This is what scared me the most and I asked the pharmacist what I could do to prevent this. She told me to use my inhaler just before taking the Toby, and that this would open up my airway to make the Toby enter more efficiently and without mishap. My inhaler, from which I take two puffs, twice a day, is Breztri. It is for maintenance and it is a combination of Symbicort and Incruse, but it also has some albuterol, which is what helps when taking the Toby. So I am off "to the races" with this stuff, for the first time, and I will report back at some point as to how it is all going. My current case of psedemonas has been a bad one; I don't feel well, I am tired and I cough constantly, with a lot coming up. Thank you, all of you, for your wonderful support! Pam

Jump to this post

Hi Pam..when I nebulize Colistin for pseudo, I use a bronchodilator to open up my lungs, then nebulized 7 percent saline, then nebulized Colistin, or Toby in your case..airway clearance is huge with pseudo to get the mucous out of our lungs..done twice a day💕

REPLY
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