Any staph sustaining atbx?

[anonymous]

I know that they have like tobi and such for people that culture psuedo constaintly, but what about us that don't, and culture staph constantly....does anyone here know of anything they can give you that can halt staph infections? I think that is the major culperate for my health decline, and so far my docs have suggested nothing....arg!!!!

Kiel, again <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Hehe thanks

 

[Mockingbird]

The only thing that works for my staph is IV meds. I forget the name of the one that is most effective for me, but I do rememeber that it smells like cat pee. Sometimes the doctors will give heavy-duty oral antibiotics; they usually don't work for me, but I'm sure they must work for others. I cannot remember the names for those either. I don't think there is anything they've ever had me taking regularly.

Heh heh, hopefully someone who pays more attention will come and offer better info. Sorry. =-)

 

[anonymous]

ah yes the unforgettable aroma of cat pee................that would be ceftazidime.........i use it too when i'm doing IV's at home and i have to majorly air the room out afterwards coz it just smells like one big cat toilet...............this particular drug is also fizzy when you first mix it up to put in the IV giving set.........looks like soda pop, smells like urine...........hmmmmm
Kat (37 with CF, NZ)

 

[JennifersHope]

My medicine that smells like cat pee is the Fortaz... oh my goodness that is the worst ..... my whole body secreted that smell while I was on that antibiotic...... I kept spraying body spray on me but I just ended up smelling like a rose.. that was peed on by a cat...

I don't know about what meds for staph... other then methicillian is used.. of course I cultured MRSA which is resistant staph....and for that I used Zyvox. IV.. It seems like it worked really well...somehow I wish though the period of being well would have lasted longer....


I would ask you dr.. but as far as I know I don't think they keep you on anything all the time for Staph because you can end up with MRSA.... I would guess they would only treat you when you become symptomatic......

Also... I don't culture pseduo all the time.. hardly ever as a matter of fact, and I am on Tobi 28/days on/Off cycle with a 3 month stay on now...


Jennifer
33 /w CF that can't sleep even after taking three sleeping pills..

 

[JennifersHope]

I just realized ceftazadine and FOrtaz are the same drug... one is generic one is brand name.....<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

Kiel
If you are meaning the MRSA or ORSA. My docs have put me on two different meds at different times. One is Vancomycin - given IV form. It can cause side effects like itching and redness (called Redman's Syndrome) taken with Benadryl side effects aren't bad though. Also there is Zyvox which can be given IV or Oral antibiotic form. Neither med has completely wiped the bacteria out but they sure do help me feel better. Also my docs used to put me on bactrim DS which didn't really make me feel any better or worse, but more or less just kept me at whatever level I was at when I started taking it.
It just depends on what your cultures show the bacteria are sensitive too. I am not growing psuedomonas (however you spell it) at the current moment, but was usually put on Fortaz and Tobramycin for that not MRSA/ORSA. That is just me though, I don't know if that is the norm.

Good luck,
Lindsey
23 w/CF and CFRD

 

[JennifersHope]

What is ORSA???? I also have been on Bactrim DS.. I love Bactrim.. It doesn't make me better when I am sick either.. even though my cultures tested sensitive to it.. but it does make me feel better....if it is like a maintaince thing.....

 

[thelizardqueen]

The only other med other then Tobi that I've been on is Colymycin, and Cipro.

 

[anonymous]

ORSA and MRSA to my knowledge are the same thing. I think it is Oxycillin Resitant Staph Aereus or something like that. Basically like the MRSA where it is resistant to most antibiotics.
My doctor has told me that the Bactrim is effective in treating the bacteria in labs, but that in actual patients it seems to be more of a maintenance thing. That is just from his experience or so he told me when I asked about it.
Hope that answers the question<img src="i/expressions/face-icon-small-smile.gif" border="0">

Lindsey
23 w/CF and CFRD

 

[anonymous]

Thanks for the posts guys!

I do have mrsa, and for it my doctor gave me this weird combination of antibiotics (not zyvox) that just seemed to like eat my stomach hehe...I don't think it did too much. I will ask about zyvox next time i go in, and maybe i can do something to bring the levels down, cause i definately feel a bit bogged up these days.

The thing i find funny is that i don't culture pseudo, and so my doctor didn't think that it would be a good idea to put me on tobi as it is only effective against pseudo. Is this true? I mean, is he right in saying that, or do you think i should try it anyways? I just feel like i could be doing more for maintenance. I mean, there are people taking colistamethate (sp? pronounciation? heh), tobi, zithromax, and who knows what else (is bactrim maintenance or clean out material?). I feel like I should be doing something to bring down my bacterial loads so that they don't do as much damage over time. I'm sure that has the biggest effect on me as I'm not symptomatic too often, and it's the slow eating away at me without doing anything that's killing me now.

Thanks guys...just some thoughts....

Kiel

 

[JennifersHope]

Keil,

Like I said I cultured MRSA and not pseduo.. in my last culture... I was put on Tobi.... anyway..... I hate all the time it takes to do it... but to me if it can keep something at bay it is worth it to me.... Bactrim is not used as maintaince.. I wish it was cause I feel so much better on it...The Mrsa I had was sensitive to Bactrim.. (but it didn't work) Vancyo , Zyvox and one other..

I would want to bring my bacteria load down as well.... for some reason even when I cultured the MRSA they didn't treat it till I got symptomatic.....

Good Luck..

Jennifer

 

[anonymous]

Kiel,
I am with you guys on wanting something to clean me out and keep me cleaned out. I was taken off of TOBI when I stopped culturing Psuedo the doc said it was pointless for me because my MRSA was resistant to the TOBI/Tobramycin. I currently take Zithromax, Pulmozyme, Albuterol, Advair on regular basis along with me enzymes and diabetes stuff. My docs used to have me on Bactrim DS all the time, but then they came back and said there can be bad side effects like causing problems with other body functions/becoming resistant and so on if you stay on it long term and that it may be causing more harm than good.
A thought for you though Kiel. They probably do not have you on many antibiotics in hopes that your cultures may change, meaning that bacteria that is currently sensitive to only 1 or 2 meds will become sensitive to more medications and therefore can be treated easier. I begged my doc for a while to put me on anything to keep the mucus/bacteria level under control and when I asked why he wouldn't he gave me that as a reason. That and that he didn't want the bacteria that I grow to become resistant to the Vanco., Zyvox and Bactrim as well and all the other meds.
If you are really concerned with it though try and track down another CF or pulmonary doc and get a second opinion. I did that because I thought something else could/should be done and ended up getting the same answers from the 2nd dr as from my doctor.

Have a great day,
Lindsey
23 w/CF and CFRD

 

[anonymous]

Well that's weird....my doc specifically said that tobi would not help against mrsa, so why would they have you take it...along with the zithromax. He specifically told me that it probably wouldn't help cause it's more effective against pseudo. However, there must be something going on, cause in two years i went from 88 to 55%...and no apparent cause. I'm thinking that it must be the staph, and that i am living with some sort of moderate infection that i have become used to, even though I don't show symptoms.

After we were both kinda confused, he put me on the zithromax anyways. I ended up taking it for 2 months but stopped, cause i didn't feel it did too much. I think it must be the mrsa. I'm gonna ask my doctor about zyvox and bactrim, maybe they can try to eradicate it. My question is, why the heck don't they have maintenance drugs for Staph? Is it cause they become resistant too fast or because they don't think it's a big enough problem? i dunno...i want like a tobi for my staph infection, ya know? I have never been on any antibiotocs accept cipro and septra ( I think septra is bactrim...no?)...so i don't know why they are so hesitant. Like do they want me to get down to 30% before they start treating it? I dunno, i find it wierd to think of the meds that you guys are on...and what I'm on. Most of the stuff I take is because I was looking for something to help me out, not because the doctor suggested it. I hate the symptomatic approach to cf, and I think it can cause a lot of damage over time. I guess I'll just have to keep taking the gsh/oregano oil until I can figure something out.

Thanks for the thoughts guys,
Kiel

 

[clairebells]

Kiel, I hear ya about wanting a nebulized antibiotic like Tobi that works for Staph! Recurring staph infections have become a huge problem for my 4 yr old CFer - and she seems to feel sicker with each one. She was on Septra (is this Bactrim?) which it was supposedly sensitive to for months, and that did nothing (except grow more staph).

Next she was on Keflex for 6 weeks, and we finally got a clear swab with that (so you might want to try that). However, her chest is still quite congested, and she coughs stuff up every other day or so, so very likely we'll be back in her pediatrician's office next week for a throat swab and more Keflex. I've heard of some people taking Keflex long term, but it is known to have a higher risk for causing resistance and increased likelihood of pseudomonas. But recurrent staph infections are miserable too, so we may end up going that route. Good luck!

Jenny (mom to Chrissy 4 w/CF and Claire 6 no/CF)

 

[bgchastain]

Kiel,
I, like you, only culture MRSA and my dr's have me take Zyvox orally 2weeks on /2 weeks off. They might throw in Bactrim on my off weeks with Zyvox, just depends on how I feel. Bactrim dosen't do much for me but the Zyvox works wonders for me. It is expensive, but well worth it. I have cultered mrsa since I was 19, but only started having trouble with it the past 3 years ( I'm now 26). My dr's were a little hesitant to use it at first, but I think it's only because Zyvox was just found to help mrsa at the time and they aren't sure the long term effects of it yet, so just be cautious, as with everything else. You should ask you dr's about it, it's the only thing that has really helped me with it. Good luck.

Bonnie

 

[anonymous]

Ah thank you Bonnie....so there is someone that takes antibiotics sustainably for staph. Did they start it just recently because it has started giving you troubles? Ugh i hate this....the not knowing what to do. Do i ask for them to do this, not knowing the future outcome of taking these antibiotics long term, or do i wait until i get real sick, with permanant lung damage. Choices choices heheh. I'll talk to them about it.

thanks

Kiel

 

[abloedel]

I have chronically cultured Staph A (not MRSA)...my last course of IV antibiotics I was given Nafcillan (sp?) in Sept. This is the longest I have made it without having to go on any antibiotics and the first time they ever gave me that...I suspect that if they were to test me right now...I would culture it again...but I did enjoy 3 months worth of no green phlegm...sadly it returned just after Christmas....

 

[bgchastain]

My dr's only started treating me for mrsa because my lung functions were dropping and I started to get fevers from it. It is a risk you'll have to figure out with the long term effects of zyvox, with me I just wasn't much of a choice, the drugs or keep going down. Zyvox has been shown to have an affect on your blood platlets, it's never happened to me, so I don't know too much about it, but you can stop taking zyvox and the counts will return to normal. They do a liver panel on me monthly just to monitor it. No problems yet, and I've been on this regimen for 2 years now. Hope it helps

Bonnie

 

[CountryMudSS]

They actually now have Vanc that you can do inhaled. The girlfriend has been doing it 2weeks on, 2 weeks off. It really does make a difference.

 

[Faust]

Kiel, I know there are a couple essential oils that are more antagonistic towards staph than others. I forget what thread it was in, but unless i'm mistaken, a guy on here used oregano oil, thyme oil, cinnamon oil, and sage(?) oil and had his culture show no pseudo or staph. Gotta be careful though, straight up nebbing some oils aren't a good idea, but a strong dilution with inhalation from a facial sauna is a much safer approach.