i would really appreciate some info from everyone who knows about staph. joe has cultured staph 3 times in the last yr and a bit. his consultant wants joe to be on antibiotics for the next TWO YEARS!!!!!!!!!!!!!!!!!!! he started off on a high dose two week course of antibiotics and now wants to halve the dose for two years. does this seem extreme to any of you . the weird thing is he is well , no cough as usual. he has had psuedonomas aswell which are under control now i presume. any advice would be much appreciated. thanks in advance<img src="i/expressions/face-icon-small-smile.gif" border="0">
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staph infection
- Thread starter welshgirl
- Start date
coltsfan715
New member
Are you meaning IV antibiotics or oral antibiotics?
Lindsey
Lindsey
yes , joe only ever goes to a special cf centre . there are 6 in the uk and we are lucky enough to live near 2 of them. i'm quite worried about this 'cos i read the posts before about "leaving" staph 'cos it keeps pa at bay. i don't htink i can question the drs though , they know what they are doing surely?<img src="i/expressions/face-icon-small-confused.gif" border="0">
i was in no way being sarcastic. i believe that if they have trained and then practised for 15 or twenty years in medicine they know a lot more than i ever will. general practitioners, on the other hand don't know as much as the people on this forum. i don't know what you call them in the us or canada but a gp just refers you on to specialists.
coltsfan715
New member
When I was younger I was on long term antibiotic treatment for staph and PA. It didn't eradicate the problem either way - in regards to the Staph/MRSA or PA.
I was on one month on of TOBI and then the off month I would take Cipro, Levaquin or Bactrim (one of the three not all three). I did that for over a year. Then I started having problems with TOBI an had to be taken off of it temporarily, after that they had me on Bactrim or Cipro (I developed an allergy to levaquin) alternating as I had with TOBI and the others. I will say that I experienced fewer infections when I was taking the antibiotics long term vs. now when I only take antibiotics when I have an infection (except TOBI). I have had more flareups that are contributed to MRSA/Staph since I stopped the long term treatment. Whereas many/most of the infections I had prior to that involved the PA - even though I was being treated with antibiotics that were effective on both Staph and PA.
In general - by what I have been told by my docs and therapists - PA is a more aggressive bug than Staph. Meaning it multiplies at a faster rate, so that is part of the reason it is such a problem and it is more destructive. The Staph may not multiply and spread as fast, but it is still an issue that needs to be addressed (in my mind anyway). I know people say that Staph can prevent PA from growing - I personally have never been told that or read it anywhere but here. I also have not looked it up as I culture both and have for a long time, so I do not have much of an interest as it doesn't matter for me. I am not saying that it is wrong I am just saying I have not read much about that other than on this site.
I can understand why your docs would want to try and eradicate the probem though.
No matter what bacteria you have in your lungs - or your son has in his lungs - it is going to do damage. So what if Staph being present COULD prevent PA from growing. The Staph will also do damage of its own. They may be hoping to clean him out and hope to keep the lungs clear of bacteria in general ... not just PA. That, to me, makes sense. I am not a big fan of the keep the Staph to prevent PA theory - but that is because I have a form of staph and know how crummy it can make you feel .. just like PA .. and I know it can cause just as much of a problem in the long run.
I would talk to your docs more about the side effects and possible outcomes and what they are hoping to see come from this long term antibiotic treatment. I know that I had been cultured/colonized for some time with PA when they put me on a long term regimine, so I never eradicated the bacteria, but like I said I did feel a bit better while I was taking the meds.
Whatever you and your docs decide I am sure it will be the best option for your son. It is always good to get advice and other people's experiences, but remember YOUR docs are the ones that see your son and treat him. Treatments work differently for each person and effect each person in a different way, so I would get information - but ultimately talk to the doc and present questions you have after reading the info on here. In experiences I have had with docs, they are open to discussing and explaining their decisions if you ask questions without being demanding or insulting (not that you are) or without treating them as though they are wrong. No one on here knows your son's history with CF like you and the docs he sees. There may be an underlying reason that they want to try this treatment. I would ask more questions of them, just because they are the doctors doesn't mean you have to take what they say without questioning it. They should understand that you are asking to better understand not to challenge them, and if they have problems with you asking that is their problem.
I hope it all works out and you guys choose the best treatment path for your son.
Lindsey
I was on one month on of TOBI and then the off month I would take Cipro, Levaquin or Bactrim (one of the three not all three). I did that for over a year. Then I started having problems with TOBI an had to be taken off of it temporarily, after that they had me on Bactrim or Cipro (I developed an allergy to levaquin) alternating as I had with TOBI and the others. I will say that I experienced fewer infections when I was taking the antibiotics long term vs. now when I only take antibiotics when I have an infection (except TOBI). I have had more flareups that are contributed to MRSA/Staph since I stopped the long term treatment. Whereas many/most of the infections I had prior to that involved the PA - even though I was being treated with antibiotics that were effective on both Staph and PA.
In general - by what I have been told by my docs and therapists - PA is a more aggressive bug than Staph. Meaning it multiplies at a faster rate, so that is part of the reason it is such a problem and it is more destructive. The Staph may not multiply and spread as fast, but it is still an issue that needs to be addressed (in my mind anyway). I know people say that Staph can prevent PA from growing - I personally have never been told that or read it anywhere but here. I also have not looked it up as I culture both and have for a long time, so I do not have much of an interest as it doesn't matter for me. I am not saying that it is wrong I am just saying I have not read much about that other than on this site.
I can understand why your docs would want to try and eradicate the probem though.
No matter what bacteria you have in your lungs - or your son has in his lungs - it is going to do damage. So what if Staph being present COULD prevent PA from growing. The Staph will also do damage of its own. They may be hoping to clean him out and hope to keep the lungs clear of bacteria in general ... not just PA. That, to me, makes sense. I am not a big fan of the keep the Staph to prevent PA theory - but that is because I have a form of staph and know how crummy it can make you feel .. just like PA .. and I know it can cause just as much of a problem in the long run.
I would talk to your docs more about the side effects and possible outcomes and what they are hoping to see come from this long term antibiotic treatment. I know that I had been cultured/colonized for some time with PA when they put me on a long term regimine, so I never eradicated the bacteria, but like I said I did feel a bit better while I was taking the meds.
Whatever you and your docs decide I am sure it will be the best option for your son. It is always good to get advice and other people's experiences, but remember YOUR docs are the ones that see your son and treat him. Treatments work differently for each person and effect each person in a different way, so I would get information - but ultimately talk to the doc and present questions you have after reading the info on here. In experiences I have had with docs, they are open to discussing and explaining their decisions if you ask questions without being demanding or insulting (not that you are) or without treating them as though they are wrong. No one on here knows your son's history with CF like you and the docs he sees. There may be an underlying reason that they want to try this treatment. I would ask more questions of them, just because they are the doctors doesn't mean you have to take what they say without questioning it. They should understand that you are asking to better understand not to challenge them, and if they have problems with you asking that is their problem.
I hope it all works out and you guys choose the best treatment path for your son.
Lindsey
hia Welshgirl,
I live in the UK, and have always had my staph treated (with fluclox at first and then other things as it has become tougher to shift). Interesting to read about staph keeping PA at bay, because I find that true - I grow "heavy staph" all the time but PA only sporadically, however I am now listed for transplant therefore something has been causing the damage, and it looks like one contributing factor was staph for me.
My personal suggestion is to question the doctors (they shouldnt mind this, they are there to explain their treatment plans to you) and if you are satisfied wiht their explanation, continue with the treatment for the staph. After all to have neither PA nor staph rife in the lungs would be the most preferable option! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I live in the UK, and have always had my staph treated (with fluclox at first and then other things as it has become tougher to shift). Interesting to read about staph keeping PA at bay, because I find that true - I grow "heavy staph" all the time but PA only sporadically, however I am now listed for transplant therefore something has been causing the damage, and it looks like one contributing factor was staph for me.
My personal suggestion is to question the doctors (they shouldnt mind this, they are there to explain their treatment plans to you) and if you are satisfied wiht their explanation, continue with the treatment for the staph. After all to have neither PA nor staph rife in the lungs would be the most preferable option! <img src="i/expressions/face-icon-small-smile.gif" border="0">
thankyou amy , and particular thanks to lindsey, that was the nicest and most informative post i have ever had on this forum. <img src="i/expressions/face-icon-small-happy.gif" border="0"> i will deffo ask joe's doc about the"keep staph to undermine pa theory"also i had no idea that having pa or staph made you feel crummy , poor joe has never mentioned it!!!!!! thanks again , take care<img src="i/expressions/face-icon-small-smile.gif" border="0">
coltsfan715
New member
Janet,
I wanted to clarify that the PA and Staph don't make me feel crummy on a regular basis, but I pretty much always have a nasty sick gunky cough ... unless I am on IVs - it usually starts again within days of being removed from IVS. I was mainly meaning that when I have infections and the major problem is a flare up of PA - I feel the same as when I have an infection and the major problem is a flare up of Staph/MRSA - both make me feel equally as crummy.
Also I tend to bounce back quicker from a flare up of PA versus a flare up of MRSA/Staph.
Sorry if I didn't state that clearly at first. I just didn't want you thinking that it was an all the time crummy feeling.
Lindsey
I wanted to clarify that the PA and Staph don't make me feel crummy on a regular basis, but I pretty much always have a nasty sick gunky cough ... unless I am on IVs - it usually starts again within days of being removed from IVS. I was mainly meaning that when I have infections and the major problem is a flare up of PA - I feel the same as when I have an infection and the major problem is a flare up of Staph/MRSA - both make me feel equally as crummy.
Also I tend to bounce back quicker from a flare up of PA versus a flare up of MRSA/Staph.
Sorry if I didn't state that clearly at first. I just didn't want you thinking that it was an all the time crummy feeling.
Lindsey
I'm one who rarely cultures staph....but hell I know when i am coz it makes me feel super crappy!! My PA and Cepacia exacerbations are pretty much symptomless, bit of extra sputum, bit more colour than usual and my pft's drop a bit....but i still have an appetite, i don't cough much, i sleep well, i don't run a temperature usually and i have energy....but when staph comes to visit all that changes!!! No appetite, no energy, feel like i've been hit by a bus!
Fortunately, i haven't cultured staph for 2 years now...and I don't want to.
I think the important thing to understand is that their are many many different strains of each of these bugs and the strength of them differs hugely, plus we are all very different in the way we react to them.
One thing though.....last time i was feeling like crap, I rang my CF nurse to tell her and check it wasn't a reaction to a drug they had me on....first thing she said was....oh, that'll be the staph!!! So there ya go!
Lindsey....it's true, you write the bestest ever posts girl!!!! You rock!
KrazyKat (NZ)
Fortunately, i haven't cultured staph for 2 years now...and I don't want to.
I think the important thing to understand is that their are many many different strains of each of these bugs and the strength of them differs hugely, plus we are all very different in the way we react to them.
One thing though.....last time i was feeling like crap, I rang my CF nurse to tell her and check it wasn't a reaction to a drug they had me on....first thing she said was....oh, that'll be the staph!!! So there ya go!
Lindsey....it's true, you write the bestest ever posts girl!!!! You rock!
KrazyKat (NZ)