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Getting sick while on Tobi?

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sarabeth87

New member
Okay so I just got off of IV Tobramycin and Ceftazpeme (sp?) about 1.5 months ago. I was on these for 4 weeks. I was also on oral Tetracycline for MRSA. So now I've been on Tobi for nearly 2 weeks and Sunday I started running fevers and coughing up green junk again. I've been on Tobi since I was about 16 I think. My brother and I both stopped taking it for a couple years because every time we got on it we would start getting sick. I've told my doctor this, but she doesn't really pay any attention to it. I culture MRSA, but my bro just cultures regular Staph. Could it be the MRSA & Staph making us sick because we're not on anything for it while we're taking Tobi? Has anyone else experienced this? I really don't want to have to do IVs again anytime soon. I've already been on them twice this year and I'm afraid I'm gonna become resistant to them if I keep taking them. I think I was on IVs 4 or 5 times last year.
 
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sarabeth87

New member
Okay so I just got off of IV Tobramycin and Ceftazpeme (sp?) about 1.5 months ago. I was on these for 4 weeks. I was also on oral Tetracycline for MRSA. So now I've been on Tobi for nearly 2 weeks and Sunday I started running fevers and coughing up green junk again. I've been on Tobi since I was about 16 I think. My brother and I both stopped taking it for a couple years because every time we got on it we would start getting sick. I've told my doctor this, but she doesn't really pay any attention to it. I culture MRSA, but my bro just cultures regular Staph. Could it be the MRSA & Staph making us sick because we're not on anything for it while we're taking Tobi? Has anyone else experienced this? I really don't want to have to do IVs again anytime soon. I've already been on them twice this year and I'm afraid I'm gonna become resistant to them if I keep taking them. I think I was on IVs 4 or 5 times last year.
 
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sarabeth87

New member
Okay so I just got off of IV Tobramycin and Ceftazpeme (sp?) about 1.5 months ago. I was on these for 4 weeks. I was also on oral Tetracycline for MRSA. So now I've been on Tobi for nearly 2 weeks and Sunday I started running fevers and coughing up green junk again. I've been on Tobi since I was about 16 I think. My brother and I both stopped taking it for a couple years because every time we got on it we would start getting sick. I've told my doctor this, but she doesn't really pay any attention to it. I culture MRSA, but my bro just cultures regular Staph. Could it be the MRSA & Staph making us sick because we're not on anything for it while we're taking Tobi? Has anyone else experienced this? I really don't want to have to do IVs again anytime soon. I've already been on them twice this year and I'm afraid I'm gonna become resistant to them if I keep taking them. I think I was on IVs 4 or 5 times last year.
 
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bethylove

Guest
I had a similar experience. I was on Ceftaz, tobra and vanco (for mrsa as well), for 2 weeks then one week later (it was my tobi month) I was sick again! Fevers, green junk, no appetite, headaches, stomach aches, the whole nine yards.

Personally, I don't think it was tobi. I think I just had real crappy luck and caught something literally walking out of the hospital.

I do, however, contribute culturing MRSA to getting so sick, so easily! And ever since I've cultured MRSA I don't find tobi as effective as it used to be. See if you can start another antibiotic instead of tobi? Try Cayston ( my personal favorite) or maybe Colisitin? Both make me feel much better than when I'm on tobi.

You might find that after cycling a few times through the cayston and colistin that when you do go back to tobi, its more effective.

As far as not going back on IVs, I managed 3 months that time I got sick a week later. I did cycles of oral antibiotics and upped my chest pt. Zyvox really seemed to help me feel a lot better (while taking it) because it really got rid of a lot of the MRSA, which I felt was the underlying problem. BUT as soon as my course of zyvox was up, I started to feel icky again. It might be worth asking about?
 
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bethylove

Guest
I had a similar experience. I was on Ceftaz, tobra and vanco (for mrsa as well), for 2 weeks then one week later (it was my tobi month) I was sick again! Fevers, green junk, no appetite, headaches, stomach aches, the whole nine yards.

Personally, I don't think it was tobi. I think I just had real crappy luck and caught something literally walking out of the hospital.

I do, however, contribute culturing MRSA to getting so sick, so easily! And ever since I've cultured MRSA I don't find tobi as effective as it used to be. See if you can start another antibiotic instead of tobi? Try Cayston ( my personal favorite) or maybe Colisitin? Both make me feel much better than when I'm on tobi.

You might find that after cycling a few times through the cayston and colistin that when you do go back to tobi, its more effective.

As far as not going back on IVs, I managed 3 months that time I got sick a week later. I did cycles of oral antibiotics and upped my chest pt. Zyvox really seemed to help me feel a lot better (while taking it) because it really got rid of a lot of the MRSA, which I felt was the underlying problem. BUT as soon as my course of zyvox was up, I started to feel icky again. It might be worth asking about?
 
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bethylove

Guest
I had a similar experience. I was on Ceftaz, tobra and vanco (for mrsa as well), for 2 weeks then one week later (it was my tobi month) I was sick again! Fevers, green junk, no appetite, headaches, stomach aches, the whole nine yards.
<br />
<br />Personally, I don't think it was tobi. I think I just had real crappy luck and caught something literally walking out of the hospital.
<br />
<br />I do, however, contribute culturing MRSA to getting so sick, so easily! And ever since I've cultured MRSA I don't find tobi as effective as it used to be. See if you can start another antibiotic instead of tobi? Try Cayston ( my personal favorite) or maybe Colisitin? Both make me feel much better than when I'm on tobi.
<br />
<br />You might find that after cycling a few times through the cayston and colistin that when you do go back to tobi, its more effective.
<br />
<br />As far as not going back on IVs, I managed 3 months that time I got sick a week later. I did cycles of oral antibiotics and upped my chest pt. Zyvox really seemed to help me feel a lot better (while taking it) because it really got rid of a lot of the MRSA, which I felt was the underlying problem. BUT as soon as my course of zyvox was up, I started to feel icky again. It might be worth asking about?
 
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tleigh

New member
I struggle with MRSA as well and have found that colistin works well for me. It is also easier for me to tolerate than the tobi.
 
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tleigh

New member
I struggle with MRSA as well and have found that colistin works well for me. It is also easier for me to tolerate than the tobi.
 
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tleigh

New member
I struggle with MRSA as well and have found that colistin works well for me. It is also easier for me to tolerate than the tobi.
 
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alluneedislove

Guest
I also have staph and MRSA and when im on tobi i feel like crap. So i have stopped taking it but would also like to try a new med. i have been hearing wonderful things about Cayston. Also when i am on Zyvox i feel like a million bucks and then off of it.......right back to where i started <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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alluneedislove

Guest
I also have staph and MRSA and when im on tobi i feel like crap. So i have stopped taking it but would also like to try a new med. i have been hearing wonderful things about Cayston. Also when i am on Zyvox i feel like a million bucks and then off of it.......right back to where i started <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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alluneedislove

Guest
I also have staph and MRSA and when im on tobi i feel like crap. So i have stopped taking it but would also like to try a new med. i have been hearing wonderful things about Cayston. Also when i am on Zyvox i feel like a million bucks and then off of it.......right back to where i started <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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tlcquiltnut

New member
When I was on toby I had kidney failure. I felt terrible the last time I was in the hospital on it and got out feeling none better.
The next time I was in the hospital they gave me toby again and that the when I had kidney failure. My advice is to get your kidney functions checked. If they are OK then you can focus on another cause of your feeling bad.
Sometimes I think we do get things while in the hospital. That is why I take percautions while in like washing hands when returning to my room, wearing a mask when outside the room. If using a public computer wear gloves. I know you are probably thinking it is a bit extreme but if it saves you from getting sick after you get home it is worth it.
If your doctor isn't listening find one that will. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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tlcquiltnut

New member
When I was on toby I had kidney failure. I felt terrible the last time I was in the hospital on it and got out feeling none better.
The next time I was in the hospital they gave me toby again and that the when I had kidney failure. My advice is to get your kidney functions checked. If they are OK then you can focus on another cause of your feeling bad.
Sometimes I think we do get things while in the hospital. That is why I take percautions while in like washing hands when returning to my room, wearing a mask when outside the room. If using a public computer wear gloves. I know you are probably thinking it is a bit extreme but if it saves you from getting sick after you get home it is worth it.
If your doctor isn't listening find one that will. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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tlcquiltnut

New member
When I was on toby I had kidney failure. I felt terrible the last time I was in the hospital on it and got out feeling none better.
<br />The next time I was in the hospital they gave me toby again and that the when I had kidney failure. My advice is to get your kidney functions checked. If they are OK then you can focus on another cause of your feeling bad.
<br />Sometimes I think we do get things while in the hospital. That is why I take percautions while in like washing hands when returning to my room, wearing a mask when outside the room. If using a public computer wear gloves. I know you are probably thinking it is a bit extreme but if it saves you from getting sick after you get home it is worth it.
<br />If your doctor isn't listening find one that will. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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tarheel

Guest
I have this trouble with Tobi and MRSA too. I really think some sort of semi-organized study thing needs to be set up.
 
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tarheel

Guest
I have this trouble with Tobi and MRSA too. I really think some sort of semi-organized study thing needs to be set up.
 
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tarheel

Guest
I have this trouble with Tobi and MRSA too. I really think some sort of semi-organized study thing needs to be set up.
 
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sarabeth87

New member
Okay I called my doctor last week (the same day I posted this) She never did return my call. Anyways, I decided to just go ahead and start taking Bactrium. I had about a 2 week supply of it from last time I was on it and my doc changed me to Zyvox in the middle of it. Anyways, I'm not feeling 100% better, but I'm not running fevers anymore and have had a lot more energy. I've noticed that when I get sick from MRSA, I feel WAY worse then when the PA makes me sick. She has talked about putting my on Cayston, but right now she has no nurse b/c my CF nurse just left for a better job. I think she told me that I will have to get the Cayston from a speciality pharmacy and I'll also have to get the device to take it in. I go to UMC in Jackson, MS and it's a very small CF clinic. There is only 1 adult doctor and 1 pediatric doctor.
 
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sarabeth87

New member
Okay I called my doctor last week (the same day I posted this) She never did return my call. Anyways, I decided to just go ahead and start taking Bactrium. I had about a 2 week supply of it from last time I was on it and my doc changed me to Zyvox in the middle of it. Anyways, I'm not feeling 100% better, but I'm not running fevers anymore and have had a lot more energy. I've noticed that when I get sick from MRSA, I feel WAY worse then when the PA makes me sick. She has talked about putting my on Cayston, but right now she has no nurse b/c my CF nurse just left for a better job. I think she told me that I will have to get the Cayston from a speciality pharmacy and I'll also have to get the device to take it in. I go to UMC in Jackson, MS and it's a very small CF clinic. There is only 1 adult doctor and 1 pediatric doctor.
 
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