Pseudo

A

anonymous

New member
HI,

I have always cultured PA since I was 12 or so. I am 23 now, and haven't cultured it in 6 months.
I'm not neccesarily reccomending going off or on anything, but I attribute it to Glutathione, since it's the only thing I've really changed this past year. Also, I think that using the TOBI regularly in conjunction with Glutathione helps. Tobi helps me keep it in control but again, the Glut has definately helped get rid of it.

Christian
 
A

anonymous

New member
HI,

I have always cultured PA since I was 12 or so. I am 23 now, and haven't cultured it in 6 months.
I'm not neccesarily reccomending going off or on anything, but I attribute it to Glutathione, since it's the only thing I've really changed this past year. Also, I think that using the TOBI regularly in conjunction with Glutathione helps. Tobi helps me keep it in control but again, the Glut has definately helped get rid of it.

Christian
 
T

thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hi Liz - How does your doc treat the pseudo? My son has been positive twice once they treated with oral antibiotics and once with the TOBI. I know one kid that they do the TOBI 28 days on then 28 off continously. My son would hate that. That's one thing I never understood - It sounds like you can get that so easy that it just seems weird to try to treat it each time. But I don't understand it all either.



Mother of Tanner 9 wCF<hr></blockquote>

The reason behind aggresively treating Pseudo, is so that it does not get worse. Pseudo is one of the main reasons that our lungs get so congested - this resulting in death. If you can control it, then you have a better chance at living longer. Hence the aggresive medications. Yes it is common for CFers to have it, but you don't want it to spiral out of control.
 
T

thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hi Liz - How does your doc treat the pseudo? My son has been positive twice once they treated with oral antibiotics and once with the TOBI. I know one kid that they do the TOBI 28 days on then 28 off continously. My son would hate that. That's one thing I never understood - It sounds like you can get that so easy that it just seems weird to try to treat it each time. But I don't understand it all either.



Mother of Tanner 9 wCF<hr></blockquote>

The reason behind aggresively treating Pseudo, is so that it does not get worse. Pseudo is one of the main reasons that our lungs get so congested - this resulting in death. If you can control it, then you have a better chance at living longer. Hence the aggresive medications. Yes it is common for CFers to have it, but you don't want it to spiral out of control.
 
A

anonymous

New member
Christian,

Can you give me more info on Glutothione? I've heard of MedImmune Plus (I think that's what it's called)... does it come in any other forms?

My doc in LA is really against it, but I know a lot of people have really really good results with it and I would like to learn more.

Thanks so much for your help!

-Amy 24/CF
 
A

anonymous

New member
Christian,

Can you give me more info on Glutothione? I've heard of MedImmune Plus (I think that's what it's called)... does it come in any other forms?

My doc in LA is really against it, but I know a lot of people have really really good results with it and I would like to learn more.

Thanks so much for your help!

-Amy 24/CF
 
J

Jane

Digital opinion leader
Amy, There's an article about it on the CFF website. Do a google search for glutathione in cf and its the second one down
 
J

Jane

Digital opinion leader
Amy, There's an article about it on the CFF website. Do a google search for glutathione in cf and its the second one down
 
T

thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>SeanDavis</b></i><br>Good to hear...I'm petrified of getting a bronch.<hr></blockquote>


SeanDavis - so was I when I found out I had to have one, but it is very easy. They put you on a morphine drip to relax you, then give you an LSD based drug that causes a sort of amnesia effect, where brain activity is temporarily cut off from your body. The last thing I remember was the nurse putting a cloth over my eyes to avoid backsplash, and I kept thinking 'oh god, I'm going to see the bronch instrument coming at me.'. Next thing I knew it was half an hour after the procedure, and I was just waking up. Wierd thing was, was that the doc informed me that throughout the entire procedure, I was talking and cracking jokes to him. I don't remember a thing!
 
T

thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>SeanDavis</b></i><br>Good to hear...I'm petrified of getting a bronch.<hr></blockquote>


SeanDavis - so was I when I found out I had to have one, but it is very easy. They put you on a morphine drip to relax you, then give you an LSD based drug that causes a sort of amnesia effect, where brain activity is temporarily cut off from your body. The last thing I remember was the nurse putting a cloth over my eyes to avoid backsplash, and I kept thinking 'oh god, I'm going to see the bronch instrument coming at me.'. Next thing I knew it was half an hour after the procedure, and I was just waking up. Wierd thing was, was that the doc informed me that throughout the entire procedure, I was talking and cracking jokes to him. I don't remember a thing!
 
A

anonymous

New member
oh liz...did that not freak you out?! knowing that you were talking and not remembering a thing!! that would scare me haha!
 
A

anonymous

New member
oh liz...did that not freak you out?! knowing that you were talking and not remembering a thing!! that would scare me haha!
 
F

Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>thelizardqueen</b></i><br><blockquote>Quote
<hr><i>Originally posted by: <b>SeanDavis</b></i>
Good to hear...I'm petrified of getting a bronch.<hr></blockquote>





SeanDavis - so was I when I found out I had to have one, but it is very easy. They put you on a morphine drip to relax you, then give you an LSD based drug that causes a sort of amnesia effect, where brain activity is temporarily cut off from your body. The last thing I remember was the nurse putting a cloth over my eyes to avoid backsplash, and I kept thinking 'oh god, I'm going to see the bronch instrument coming at me.'. Next thing I knew it was half an hour after the procedure, and I was just waking up. Wierd thing was, was that the doc informed me that throughout the entire procedure, I was talking and cracking jokes to him. I don't remember a thing!<hr></blockquote>

/gets the heeby jeebies!
 
F

Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>thelizardqueen</b></i><br><blockquote>Quote
<hr><i>Originally posted by: <b>SeanDavis</b></i>
Good to hear...I'm petrified of getting a bronch.<hr></blockquote>





SeanDavis - so was I when I found out I had to have one, but it is very easy. They put you on a morphine drip to relax you, then give you an LSD based drug that causes a sort of amnesia effect, where brain activity is temporarily cut off from your body. The last thing I remember was the nurse putting a cloth over my eyes to avoid backsplash, and I kept thinking 'oh god, I'm going to see the bronch instrument coming at me.'. Next thing I knew it was half an hour after the procedure, and I was just waking up. Wierd thing was, was that the doc informed me that throughout the entire procedure, I was talking and cracking jokes to him. I don't remember a thing!<hr></blockquote>

/gets the heeby jeebies!
 
T

thelizardqueen

New member
Very freaky. Its kind of scary knowing you were awake, but not remembering a single thing. Like the doc slipped me a ruphy or something.
 
T

thelizardqueen

New member
Very freaky. Its kind of scary knowing you were awake, but not remembering a single thing. Like the doc slipped me a ruphy or something.
 
R

Ruby

Guest
Hi Liz,

that would scare the s*** out of me! On the pseudo treatment thing, when you are on one month on and one month off do you take any other nebs or oral antibiotics on your month off or do you have a month with no nebs at all? I take 28 days tobi and then 28 days colomycin for psuedo although I haven't cultured it in over a year and I like the sounds of a month off.

Thanks.
 
R

Ruby

Guest
Hi Liz,

that would scare the s*** out of me! On the pseudo treatment thing, when you are on one month on and one month off do you take any other nebs or oral antibiotics on your month off or do you have a month with no nebs at all? I take 28 days tobi and then 28 days colomycin for psuedo although I haven't cultured it in over a year and I like the sounds of a month off.

Thanks.
 
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