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Grendel
05-28-2006, 01:55 AM
I have several infections, but the one that grew out the strongest it pseduomonias resistant bacteria. Resistant to Cipro and all the other oral antibiotic family. In the last two weeks my PFTs, FEV1 dropped from 58% to 44% and my "doctor" thinks that Inhailed TOBI and Cipro are going to fix me up. I think he has been nursing a stupidity hangover with more stupidity.

What do you think? I know that, as with Allen last year, who had Burkholderia cepacia, that they were giving him half a dozen or more antibiotics to combat bacteria that was resistant to everything or most everything. So I am aware of the theory, but to use only 2 antibiotics and to use such a week effort after dropping 14% FEV1, I think that this approach is all wrong.

Please share your thoughts.

Thanks.
Grendel

HairGirl
05-28-2006, 02:23 AM
I agree with you, I have P.B. Cepacia and am resistant to everything but two strong antibiotics(IV's), I've been off Tobi and Cipro for a long time, Tobi mainly because it causes hemoptysis. So to me, it needs to be strong! I've always on Mero & Ceftaz.

NoExcuses
05-28-2006, 03:11 AM
Well, there are two different way to treat an infection.

TOBI, or nebulized tobramycin, can reach the lungs at HIGHER concentrations than IV antibiotics. Why? Because the antibiotic goes directly to the lungs and there is almost 0 system exposure. TOBI becomes an issue when it can't reach the site of the infection - infection is hiding behind a restricted airway or a mucus plug.

Tobramycin, however, can reach a site of an infection even if it's blocked by a mucus plug or restricted airway because tobramycin is system - it circulates through your blood stream and reaches every inch of your body. But because of this, concentrations of tobramycin can't be that high. Tobramycin can be renally toxic (bad for the kidneys) and therefore blood levels must be monitored.

So TOBI + Cipro may or may not do the trick. I know that combination therapy is a big thing with CF patients because many of us are resis to some antibitioc or another.

My 1st instinct would be oral IV's. But if you doc thinks your Tobramycin concentration needs to be higher, then TOBI is the issue as long as it can reach the site of the infection.

kybert
05-28-2006, 03:31 AM
i agree that its a weak effort. im in the same situation as you actually. went from 62 to 42%. normally they would freak out but all my doc did was put me on cipro and tob nebs. he knows it doesnt work when im that sick so god knows why he did it. needless to say, the course has finished and im not back to my best. looks like ive wasted 2 weeks of my life and i will have to spend another 2 being on iv's. my rule of thumb is if you have dropped more than 10%, iv's will be the only thing that will work.

Grendel
06-18-2006, 04:39 AM
UPDATE:

Well, the doctor's prescription for my exacerbation turned out to be a real screw up.

Despite having pseudomonas resistant bacteria and MRSA, I nervously followed the doctor's regimen. I had asked him to give me Zyvox or at least something to address the MRSA that I cultured over the past several years and just three months previous despite that his last test, 2 weeks before, failed to culture for MRSA. Despite my concerned request, he would not address the MRSA, which really surprised and aggravated me. Anyway, I gave it one week and my FEV1 dropped to 37%. I was so pissed. I could not believe almost 2-3 weeks before I was at 60% FEV1, went to 47% FEV1, and then to 37%. At 37% they wanted to clearly hospitalize me. They would have been totally remiss had they not at that point, but I absolutely did not trust this CF doctor's judgment after he let me drop so far with such a weak response. I thankfully had another solution.

In my anger and frustration I called my former CF physicians (I had moved over a month previous) in another state, and asked my old CF care team if I could return to be hospitalized, and so I was. To make things worse, it took me about 24 hrs to get to my former doctors, and by the time I had arrived in the hospital on IVs, I swear my FEV1 dropped into the 20s (percentile). I could barely breathe and I was panting like a dog. Also, the hospital I ended up at tested me positive for MRSA.

After two weeks of hospital care, my FEV1 is now at 45%, (my FVC is also down by almost 20%) and I have no wheezing or noise from my lung, suggesting that what can be cleared out has been, and that my baseline has dropped due to a bad bacteria scaring my lungs.

I will never go back to that doctor. I wish I could sue him for having lost that 15% FEV1. He is a real dumb SOB.

So now I am that much closer to the realism of a transplant. I know that could be some time away, but to me, right now, 45% FEV1 baseline feels distinctly worse than my previous (a week before all this happened) 60% FEV1 score.

Would it be wrong if I posted the doctor's name and clinic, to warn other CFers?
Do you think I have a real point of contention or am I over blowing this?

Please share with me your opinions.

Thanks,
Grendel

NoExcuses
06-18-2006, 01:34 PM
There are bogus doctors everywhere.

And I think it's up to the patient to make their own decisions regarding each doc.

But with that said, the more information that everyone has to make those decisions, the better.

Call the doc out - I don't think there's anything wrong with that. That's why I support the CF Foundation releasing their CF Center rankings (which they won't cuz they're afraid of offending docs).

I'm sorry to hear that your'e not doing as well as you were. But there's no reason that you can't get back up to an FEV1 of 60%. I believe in you!


FIGHT ON!

anonymous
06-21-2006, 10:01 PM
Sue him! I would. I am surprise more people don't have an opinion on this.

Best of luck,
Ben

littledebbie
06-21-2006, 10:29 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i> But there's no reason
that you can't get back up to an FEV1 of 60%. I believe in you!
FIGHT ON!</end quote></div><br>
<br>
It's not that I disagree with you exactly I'm sure she probably can
get her PFT's up possibly a bit more, and hopefully completely, and
perhaps you just mean in a positive thinking way..but to say
"no reason that you can't get them back up to an FEV1 of
60%"? No reason? &nbsp;I think that might be just a tad over
the top. I only say this because even 50 or 55% would be really
great and take a lot of work but there's every possibility that she
not get back to 60% and it wouldn't be lack of effort I bet.
&nbsp;I'm just saying we do have progressive lung disease and i
don't think we should roll over and accept deteriation but we
should be careful not set ourselves up to be disappointed or blame
ourselves if we cannot get our PFT's back up. &nbsp;<br>
<br>
Obviously this is touchy to me as my PFT's are so sucktacular and
I'm a bit sensitive about things sounding like it's entirely within
our control to maintain lung function. so I apologize if I'm being
a drag or whatever because I do believe in a positive attitude and
working our butts of for every percentile we can eek out i just
don't like the idea of making myself feel entirely responsible for
the outcome.

NoExcuses
06-21-2006, 10:44 PM
ummmmmm i'm just being encouraging. relax.

littledebbie
06-22-2006, 12:28 AM
hmmm okay...I know I'm touchy about that...sorry <img src="i/expressions/face-icon-small-happy.gif" border="0"><br>
<br>
*shakes hands and&nbsp;go for an ice cream on a hot day together*
(that's us in internetland)

NoExcuses
06-22-2006, 01:49 AM
seriously i didn't mean to offend. rather i was going for the opposite <img src="i/expressions/face-icon-small-smile.gif" border="0">

-amy

littledebbie
06-22-2006, 05:15 AM
Oh don't worry about it I know I'm over sensitive on that issue but
that's not your fault. &nbsp;It's over done, we're cool. &nbsp;I
totally know you didn't mean anything negative by that, more to
encourage. &nbsp;No worries, I was over sensitive and I know it,
thanks for not blowing my hair back.