pseudemona question

[wanderlost]

1) is it pseudenoma or pseudemona?
2)The last time I went to the clinic, about a week ago, I just happened to glance at my chart and saw a lab sheet that said many pseudemona asperillius (or whatever) type 2. So I asked the doc, as I have NEVER been told that I have psuedemonas. I do not take any Cf related meds save for creon, albuterol and advair. Though I did just get a nebulizer to try the hypertonic saline (which I don't have yet). So, obvioulsy I have never been treated for this. The doc said that because I was older when I got it - though I have no idea when - probably after my son was born because I did not go to the clinic regularly before that, and because it isn't consistently in my cultures and because my PFTs are about the same and the fact that I am consistently gaining weight (I am offically "overweight" for my height!) that it wasn't a big deal. He basically gave me the idea that all Cfers get it and since my health is good not to worry about it...does this seem right? I am in no hurry to get on any meds, so tobi and the like doesn't seem like a great option to me, but I certainly do not want to exacerbate my situation. Opinions??
Also, when going through my labs he mentioned gram negative rods or something like that. Anyone know what that means? Thanks all!

 

[wanderlost]

1) is it pseudenoma or pseudemona?
2)The last time I went to the clinic, about a week ago, I just happened to glance at my chart and saw a lab sheet that said many pseudemona asperillius (or whatever) type 2. So I asked the doc, as I have NEVER been told that I have psuedemonas. I do not take any Cf related meds save for creon, albuterol and advair. Though I did just get a nebulizer to try the hypertonic saline (which I don't have yet). So, obvioulsy I have never been treated for this. The doc said that because I was older when I got it - though I have no idea when - probably after my son was born because I did not go to the clinic regularly before that, and because it isn't consistently in my cultures and because my PFTs are about the same and the fact that I am consistently gaining weight (I am offically "overweight" for my height!) that it wasn't a big deal. He basically gave me the idea that all Cfers get it and since my health is good not to worry about it...does this seem right? I am in no hurry to get on any meds, so tobi and the like doesn't seem like a great option to me, but I certainly do not want to exacerbate my situation. Opinions??
Also, when going through my labs he mentioned gram negative rods or something like that. Anyone know what that means? Thanks all!

 

[thelizardqueen]

Pseudo is common in CFer's. Its inevitable that sooner or later you'll get it. I cultured it when I was quiet young - 8 years old I believe, and didn't start going on inhaled meds to control it till I was about 15. What does your doc usually give you for chest infections? If what you're taking is working, then I wouldn't worry too much. My docs used to put me on Cipro for infections, and that still does the trick, although every once and awhile I go on TOBI one month on, one month off because I sometimes culture pseudo +4. I wouldn't worry about pseudo that much - it isn't a death sentence if that's what you're worrying about. I've had it for over 10 years, and I still have very minor lung problems - I've only ever been hospitalized once for a lung infection in my life.

 

[thelizardqueen]

Pseudo is common in CFer's. Its inevitable that sooner or later you'll get it. I cultured it when I was quiet young - 8 years old I believe, and didn't start going on inhaled meds to control it till I was about 15. What does your doc usually give you for chest infections? If what you're taking is working, then I wouldn't worry too much. My docs used to put me on Cipro for infections, and that still does the trick, although every once and awhile I go on TOBI one month on, one month off because I sometimes culture pseudo +4. I wouldn't worry about pseudo that much - it isn't a death sentence if that's what you're worrying about. I've had it for over 10 years, and I still have very minor lung problems - I've only ever been hospitalized once for a lung infection in my life.

 

[Landy]

I have pseudomonas and I have cultured aspergillosis before too. Aspergillosis is a fungus that we can culture. It can be found in soil, in rotting house plants, maybe rotten onions?? and in other places.
The pseudomonas is pretty norm for CFs and the aspergillosis I only cultured one time but was told that is only is an issue if you are allergic to it (or something along those lines). The sent my aspergillius culture to California to run tests on it & it came back that I was not allergic to it, so I was relieved.
Have you tried the search engine here for threads related to this? Possibly there is other information out there that you could read up on.
Don't be afraid to call the nurse & ask for copies of sputum cultures, lab work, PFT's, etc. I try to keep copies in a notebook just so I'm on top of things and well informed.

 

[Landy]

I have pseudomonas and I have cultured aspergillosis before too. Aspergillosis is a fungus that we can culture. It can be found in soil, in rotting house plants, maybe rotten onions?? and in other places.
The pseudomonas is pretty norm for CFs and the aspergillosis I only cultured one time but was told that is only is an issue if you are allergic to it (or something along those lines). The sent my aspergillius culture to California to run tests on it & it came back that I was not allergic to it, so I was relieved.
Have you tried the search engine here for threads related to this? Possibly there is other information out there that you could read up on.
Don't be afraid to call the nurse & ask for copies of sputum cultures, lab work, PFT's, etc. I try to keep copies in a notebook just so I'm on top of things and well informed.

 

[anonymous]

Liz- whenyou say that you once in awhile go on tobi one month on and one month off-- is that consistently and routine on and off or is it on and off for just several months at a time?

 

[anonymous]

Liz- whenyou say that you once in awhile go on tobi one month on and one month off-- is that consistently and routine on and off or is it on and off for just several months at a time?

 

[thelizardqueen]

I'm on and off for a total of about 6 months. THen I go off for awhile (6 months off) so that I don't become sensitive to TOBI. I have minor lung damage, and don't culture psuedo unless I am sick with an infection. If I don't have an infection, then I don't cough at all, or produce any bacteria. As of now, I haven't taken TOBI in almost a year, but the doc is going to put me back on it in a few weeks, and we'll see how long he keeps me on it again. I hope this had made sense. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

I'm on and off for a total of about 6 months. THen I go off for awhile (6 months off) so that I don't become sensitive to TOBI. I have minor lung damage, and don't culture psuedo unless I am sick with an infection. If I don't have an infection, then I don't cough at all, or produce any bacteria. As of now, I haven't taken TOBI in almost a year, but the doc is going to put me back on it in a few weeks, and we'll see how long he keeps me on it again. I hope this had made sense. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[65rosessamurai]

I would find it most beneficial if the docs were to give you copies of the test results, etc. For one thing, some of the words, etc., could be searched on the internet for personal research (and to add further challenging questions for the doc to answer).
The most I had was auriginosis, and was only given Tobi once, and that was at the age of 18. After that, I was basically on oral anti-biotics, even now, I think the doc here gives me something other than sugar pills to kick those bacteria a**es!
anyway, hope the treatment is easier (and easier to pronounce) than the bacteria. Get well, soon!!

Fred

 

[65rosessamurai]

I would find it most beneficial if the docs were to give you copies of the test results, etc. For one thing, some of the words, etc., could be searched on the internet for personal research (and to add further challenging questions for the doc to answer).
The most I had was auriginosis, and was only given Tobi once, and that was at the age of 18. After that, I was basically on oral anti-biotics, even now, I think the doc here gives me something other than sugar pills to kick those bacteria a**es!
anyway, hope the treatment is easier (and easier to pronounce) than the bacteria. Get well, soon!!

Fred

 

[wuffles]

Although pseudomonas is generally associated with a decline in lung function, it affects people differently. Some need to treat it aggressively to stop active infections but for some people it sits there doing not much at all and just flares up every now and then. I culture pseudomonas at every appointment (since about 3 years ago) and I don't treat it regularly because it doesn't seem to be causing a decline in my lung function. When it flares up I take oral antibiotics and tobramycin.

 

[wuffles]

Although pseudomonas is generally associated with a decline in lung function, it affects people differently. Some need to treat it aggressively to stop active infections but for some people it sits there doing not much at all and just flares up every now and then. I culture pseudomonas at every appointment (since about 3 years ago) and I don't treat it regularly because it doesn't seem to be causing a decline in my lung function. When it flares up I take oral antibiotics and tobramycin.

 

[wallflower]

Same for me. Unless I get a bad infection or my pfts start going down, mine isn't really treated either. I take zithromax every day, and I'm not sure if that is to help keep the pseud in check, but I've had mine for a long time as well.

 

[wallflower]

Same for me. Unless I get a bad infection or my pfts start going down, mine isn't really treated either. I take zithromax every day, and I'm not sure if that is to help keep the pseud in check, but I've had mine for a long time as well.

 

[anonymous]

When a doctor refers to 'gram negative rods' he is referring to the 'type' of bacteria you have. Pseudonomas and Cepacia for instance are both gram negative rods - Staph on the other hand is a gram positive cocci. The type of bacteria depicts what type of antibiotics will be effective.

Kat (37 with CF, NZ)

 

[anonymous]

When a doctor refers to 'gram negative rods' he is referring to the 'type' of bacteria you have. Pseudonomas and Cepacia for instance are both gram negative rods - Staph on the other hand is a gram positive cocci. The type of bacteria depicts what type of antibiotics will be effective.

Kat (37 with CF, NZ)

 

[anonymous]

Yeh Pseudemonas is very common in cfers. Im 19 and i suppose u could say that pseudemonas is a particular favourite infection of mine. Ive been on Tobi for bout 5 yrs and instead of doin a month off and month off, i have it every other day cos i found that in my month off my lung functuion would go down. I dnt really get ill, ive always ahd a cough and it gets worse if i have an infection.

--------------------------
Emily, Uk

 

[anonymous]

Yeh Pseudemonas is very common in cfers. Im 19 and i suppose u could say that pseudemonas is a particular favourite infection of mine. Ive been on Tobi for bout 5 yrs and instead of doin a month off and month off, i have it every other day cos i found that in my month off my lung functuion would go down. I dnt really get ill, ive always ahd a cough and it gets worse if i have an infection.

--------------------------
Emily, Uk