Pseudo

anonymous

New member
DS cultured pseudo at 3 months old. What else are we supposed to do? Can't use Cipro on very very young children 'cuz it's been shown to cause damage problems with cartiledge. Studies have shown that Tobi used early on have erradicated nonmucoid pa in small children before the age of 6, so once it's erradicated, they don't need it any longer.

More and more antibiotics are being developed, used to treat different things, so hopefully, something new will come down the pipe -- drug companies are working on a powdered form of colmycin, tobi.... that is used in an inhaler instead of nebulizer. And besides, maybe there'll be a cure or sean davis oil of oregano will the gold standard for treatment in a few years.
 

anonymous

New member
DS cultured pseudo at 3 months old. What else are we supposed to do? Can't use Cipro on very very young children 'cuz it's been shown to cause damage problems with cartiledge. Studies have shown that Tobi used early on have erradicated nonmucoid pa in small children before the age of 6, so once it's erradicated, they don't need it any longer.

More and more antibiotics are being developed, used to treat different things, so hopefully, something new will come down the pipe -- drug companies are working on a powdered form of colmycin, tobi.... that is used in an inhaler instead of nebulizer. And besides, maybe there'll be a cure or sean davis oil of oregano will the gold standard for treatment in a few years.
 

thelizardqueen

New member
I just don't have much faith that new and exciting antibiotics that are better then TOBI will be invented. I think back over the past 24 years, and the only new thing I can think of that has done a fantasic job with Pseudo is TOBI, and maybe Colymicyn. That's 2 wonder drugs in 24 years. Correct me if I'm wrong. I cultured Pseudo when I was 6 and went on Amoxo, or Cloxo, and it did the trick. Pseudo was erradicated from me when I was 6 years old, and didn't come back till I was 8 or 9. I didn't have TOBI back then. I'm just saying that TOBI is not the only drug out there that can do the trick.

That being said - if you've cultured Pseudo off and on/ or continuously for 26 months, then that means that Pseudo has colonized, and you will never get rid of it. You say your DS cultured Pseudo at 3 months. How old is he now?
 

thelizardqueen

New member
I just don't have much faith that new and exciting antibiotics that are better then TOBI will be invented. I think back over the past 24 years, and the only new thing I can think of that has done a fantasic job with Pseudo is TOBI, and maybe Colymicyn. That's 2 wonder drugs in 24 years. Correct me if I'm wrong. I cultured Pseudo when I was 6 and went on Amoxo, or Cloxo, and it did the trick. Pseudo was erradicated from me when I was 6 years old, and didn't come back till I was 8 or 9. I didn't have TOBI back then. I'm just saying that TOBI is not the only drug out there that can do the trick.

That being said - if you've cultured Pseudo off and on/ or continuously for 26 months, then that means that Pseudo has colonized, and you will never get rid of it. You say your DS cultured Pseudo at 3 months. How old is he now?
 

littledebbie

New member
Also, when did having to Pseudo starting meaning that you were automatically on antibiodicts? Pseudo is not a death sentence. Most of the time with breathing treatments and lung clearance with good physical activity you can stay quite healthy even with Pseudo. I think more dangerous than pseudo is drug resistance. Even doing tobi on and off eventually you have an exacerbation and need iv antibiodicts etc. It seems dangerous to me to have already gone for the heavy artillerary at such an early stage of the battle. Again these are just my thoughts I'm not trying to criticize although I do think maybe these are questions it may be worth asking Dr.'s, heck maybe there is some great plan here that I'm not seeing. I agree with Liz though tobi is one of the best they've come up with and I can vouch for 26 years. Great drugs are really few and far between and often they come in the form of improved versions of what we already had..hence the transition form tobramyacin to tobi.....you hate to be building resistance to these unnecessarily. I guess I think you have to look at it like this and say if this <i>is</i> all they come up with, nothing else is coming down the pike and there will be no cure. Is this how you want to have played your hand? Mixed analogies is this post...he he...sorry
 

littledebbie

New member
Also, when did having to Pseudo starting meaning that you were automatically on antibiodicts? Pseudo is not a death sentence. Most of the time with breathing treatments and lung clearance with good physical activity you can stay quite healthy even with Pseudo. I think more dangerous than pseudo is drug resistance. Even doing tobi on and off eventually you have an exacerbation and need iv antibiodicts etc. It seems dangerous to me to have already gone for the heavy artillerary at such an early stage of the battle. Again these are just my thoughts I'm not trying to criticize although I do think maybe these are questions it may be worth asking Dr.'s, heck maybe there is some great plan here that I'm not seeing. I agree with Liz though tobi is one of the best they've come up with and I can vouch for 26 years. Great drugs are really few and far between and often they come in the form of improved versions of what we already had..hence the transition form tobramyacin to tobi.....you hate to be building resistance to these unnecessarily. I guess I think you have to look at it like this and say if this <i>is</i> all they come up with, nothing else is coming down the pike and there will be no cure. Is this how you want to have played your hand? Mixed analogies is this post...he he...sorry
 

anonymous

New member
Isn't there some work being done now to come up with a way to break down the "slime" itself (not antibiotic against pseudo, but slime buster)?
I think I remember my 1st husband (the medical microbiologist) mentioning this at our daughter's wedding 4-5 years ago.
It takes so long to get a drug from the lab through the pipeline to people (10 years or so) it can make you crazy.
But he seemed to think there was a lot of good stuff going on in the labs now.
 

anonymous

New member
Isn't there some work being done now to come up with a way to break down the "slime" itself (not antibiotic against pseudo, but slime buster)?
I think I remember my 1st husband (the medical microbiologist) mentioning this at our daughter's wedding 4-5 years ago.
It takes so long to get a drug from the lab through the pipeline to people (10 years or so) it can make you crazy.
But he seemed to think there was a lot of good stuff going on in the labs now.
 

thelizardqueen

New member
That's the problem. So many "good" things are happening in the labs, but hardly anything is coming out to the general public. TOBI is the only "wonder" drug to come out in the past 25 years. I've heard of my doctors talking about all these new treatments that are being worked on, but I don't see anything happening with the public. I really don't think we'll see anything as great as TOBI for a while now. I've heard of the slime buster from my doctor, but that was a good 5-6 years ago I believe.
 

thelizardqueen

New member
That's the problem. So many "good" things are happening in the labs, but hardly anything is coming out to the general public. TOBI is the only "wonder" drug to come out in the past 25 years. I've heard of my doctors talking about all these new treatments that are being worked on, but I don't see anything happening with the public. I really don't think we'll see anything as great as TOBI for a while now. I've heard of the slime buster from my doctor, but that was a good 5-6 years ago I believe.
 

Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>littledebbie</b></i><br>Also, when did having to Pseudo starting meaning that you were automatically on antibiodicts? Pseudo is not a death sentence. Most of the time with breathing treatments and lung clearance with good physical activity you can stay quite healthy even with Pseudo. I think more dangerous than pseudo is drug resistance. Even doing tobi on and off eventually you have an exacerbation and need iv antibiodicts etc. It seems dangerous to me to have already gone for the heavy artillerary at such an early stage of the battle. Again these are just my thoughts I'm not trying to criticize although I do think maybe these are questions it may be worth asking Dr.'s, heck maybe there is some great plan here that I'm not seeing. I agree with Liz though tobi is one of the best they've come up with and I can vouch for 26 years. Great drugs are really few and far between and often they come in the form of improved versions of what we already had..hence the transition form tobramyacin to tobi.....you hate to be building resistance to these unnecessarily. I guess I think you have to look at it like this and say if this <i>is</i> all they come up with, nothing else is coming down the pike and there will be no cure. Is this how you want to have played your hand? Mixed analogies is this post...he he...sorry<hr></blockquote>


Yes @ littledebbie. You can have pseudo and use good lung clearance and exercise, and proper supplements and stay pretty healthy for a long time. I have no idea how long I have had pseudo, probably in my mid to late teens maybe, and im about to be 35. Even without the oregano oil I have been doing, I was at about 83% PFT after my last clean out. Of course everyone is different with their different mutations, so who knows. I find that the vest + what I am doing now makes me feel even better than I do without the vest. I'm gonna try the accapella thingy here soon and see how that feels, and the hypertonic.


It's a hard call when it comes to being the parent of a real young child that has cultured pseudo. The problem with pseudo is that you will ALWAYS get it back. You might "eradicate it" now after a year or two of tobi use at a real young age, but it's guaranteed to get you later on down the line at some age, just because pseudo is EVERYWHERE in our environment and social circles, even if you 100% avoid all other CF patients. Pseudo is in our water, our soil, and on nearly every surface we interact with. About the only way to not contract it would be to stick a child into one of those sterile bubbleboy environments for their entire life, and then i'd bet it would STILL get to them somehow. Pseudo is just a part of having CF, in my opinion, just accept that eventually you will get it for good, and live the best lifestyle you can with exercise, good clearance techniques, and proper supplementation to keep yourself healthy, and you could still live a very long time.
 

Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>littledebbie</b></i><br>Also, when did having to Pseudo starting meaning that you were automatically on antibiodicts? Pseudo is not a death sentence. Most of the time with breathing treatments and lung clearance with good physical activity you can stay quite healthy even with Pseudo. I think more dangerous than pseudo is drug resistance. Even doing tobi on and off eventually you have an exacerbation and need iv antibiodicts etc. It seems dangerous to me to have already gone for the heavy artillerary at such an early stage of the battle. Again these are just my thoughts I'm not trying to criticize although I do think maybe these are questions it may be worth asking Dr.'s, heck maybe there is some great plan here that I'm not seeing. I agree with Liz though tobi is one of the best they've come up with and I can vouch for 26 years. Great drugs are really few and far between and often they come in the form of improved versions of what we already had..hence the transition form tobramyacin to tobi.....you hate to be building resistance to these unnecessarily. I guess I think you have to look at it like this and say if this <i>is</i> all they come up with, nothing else is coming down the pike and there will be no cure. Is this how you want to have played your hand? Mixed analogies is this post...he he...sorry<hr></blockquote>


Yes @ littledebbie. You can have pseudo and use good lung clearance and exercise, and proper supplements and stay pretty healthy for a long time. I have no idea how long I have had pseudo, probably in my mid to late teens maybe, and im about to be 35. Even without the oregano oil I have been doing, I was at about 83% PFT after my last clean out. Of course everyone is different with their different mutations, so who knows. I find that the vest + what I am doing now makes me feel even better than I do without the vest. I'm gonna try the accapella thingy here soon and see how that feels, and the hypertonic.


It's a hard call when it comes to being the parent of a real young child that has cultured pseudo. The problem with pseudo is that you will ALWAYS get it back. You might "eradicate it" now after a year or two of tobi use at a real young age, but it's guaranteed to get you later on down the line at some age, just because pseudo is EVERYWHERE in our environment and social circles, even if you 100% avoid all other CF patients. Pseudo is in our water, our soil, and on nearly every surface we interact with. About the only way to not contract it would be to stick a child into one of those sterile bubbleboy environments for their entire life, and then i'd bet it would STILL get to them somehow. Pseudo is just a part of having CF, in my opinion, just accept that eventually you will get it for good, and live the best lifestyle you can with exercise, good clearance techniques, and proper supplementation to keep yourself healthy, and you could still live a very long time.
 

anonymous

New member
link to one biofilm research project
<a target=new class=ftalternatingbarlinklarge href="http://www.njc.org/news/tech/techsum04-08.aspx
">http://www.njc.org/news/tech/techsum04-08.aspx
</a>
one of many, I believe....
-lisav
 

anonymous

New member
link to one biofilm research project
<a target=new class=ftalternatingbarlinklarge href="http://www.njc.org/news/tech/techsum04-08.aspx
">http://www.njc.org/news/tech/techsum04-08.aspx
</a>
one of many, I believe....
-lisav
 

anonymous

New member
clinical trials etc
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/research/clinical_trials/ongoing_trials/">http://www.cff.org/research/clinical_trials/ongoing_trials/</a>
 

anonymous

New member
clinical trials etc
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/research/clinical_trials/ongoing_trials/">http://www.cff.org/research/clinical_trials/ongoing_trials/</a>
 

Faust

New member
Cool. Yeah I seriously think they need to seriously start to rethink how they attack bacteria and other microbes in a patients system, besides a laundry list of antibiotics. They could probably look at how many essential oil components attack microbes and kill them off via heat/smothering them/attacking the bacterias outter layer like monolaurin does. I'm pretty sure they could make some real cool drugs from essential oils and monolaurin, and amplify their effects to high levels, and we could manage our bugs or flat out get rid of them much better with no resistances at all.


Sometimes you just gotta start with a clean slate drawing board wise, and totally rethink what you know with new wild approaches. Continuing to stay with the same method and just trying to develope a better mouse trap to make up for ever increasing resistances isn't the answer in my opinion.
 

Faust

New member
Cool. Yeah I seriously think they need to seriously start to rethink how they attack bacteria and other microbes in a patients system, besides a laundry list of antibiotics. They could probably look at how many essential oil components attack microbes and kill them off via heat/smothering them/attacking the bacterias outter layer like monolaurin does. I'm pretty sure they could make some real cool drugs from essential oils and monolaurin, and amplify their effects to high levels, and we could manage our bugs or flat out get rid of them much better with no resistances at all.


Sometimes you just gotta start with a clean slate drawing board wise, and totally rethink what you know with new wild approaches. Continuing to stay with the same method and just trying to develope a better mouse trap to make up for ever increasing resistances isn't the answer in my opinion.
 

anonymous

New member
it is cool.
1st husband was a total jerk (no people skills and as faithful as a tomcat), but a damn good researchers.
There are lots of those around who we don't see at the clinics and such. (Good researchers, I mean - don't know about the other... ;-)
we don't hear about stuff until it gets to clinical trial level.
that's why I think folks shouldn't count on new stuff (especially one new thing they've heard about)- but shouldn't rule it out either.
This whole new/old idea of interrupting the process rather than just having new antibiotic after new antibiotic is very interesting to me.
And stuff in this category might make it through the clinical trial process more quickly.
 

anonymous

New member
it is cool.
1st husband was a total jerk (no people skills and as faithful as a tomcat), but a damn good researchers.
There are lots of those around who we don't see at the clinics and such. (Good researchers, I mean - don't know about the other... ;-)
we don't hear about stuff until it gets to clinical trial level.
that's why I think folks shouldn't count on new stuff (especially one new thing they've heard about)- but shouldn't rule it out either.
This whole new/old idea of interrupting the process rather than just having new antibiotic after new antibiotic is very interesting to me.
And stuff in this category might make it through the clinical trial process more quickly.
 
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