When infection can't be identified but your lungs show inflammation

[CFkitty]

My doc is thinking IVs, after 4 different antibiotics and prednisone over the past 3 weeks. New CT scans show pockets of inflammation "all over" (not localized). Nothing new growing on cultures, but due to inflammation, doc says that I might not be getting stuff out of those pockets to try to grow cultures.

Since I haven't had a noticeable response to any of the antibiotics or steroids, he is thinking IVs. Inflammation is what leads to scarring, which is what causes decrease in lung function.

So while I don't feel "horrible", I am sick with no improvement. I loathe the idea of IVs to prevent this from going further, but I'm nervous bc my last two PICCs ended up in blood clots. Without a PICC, I could be inpatient for the 2 weeks. Waiting to hear from doc on his plan.

Has this happened to anyone? All my other IV courses were in response to severe exacerbations. It's weird to think of it as preventive or a stop-agent.

Is it just me? Or do others out there get IVs so that things don't go completely downhill. Mind you, my PFTs have been anywhere from 100%+ to 46%...to show you how "sick" I have been in the past.

 

[CFkitty]

My doc is thinking IVs, after 4 different antibiotics and prednisone over the past 3 weeks. New CT scans show pockets of inflammation "all over" (not localized). Nothing new growing on cultures, but due to inflammation, doc says that I might not be getting stuff out of those pockets to try to grow cultures.

Since I haven't had a noticeable response to any of the antibiotics or steroids, he is thinking IVs. Inflammation is what leads to scarring, which is what causes decrease in lung function.

So while I don't feel "horrible", I am sick with no improvement. I loathe the idea of IVs to prevent this from going further, but I'm nervous bc my last two PICCs ended up in blood clots. Without a PICC, I could be inpatient for the 2 weeks. Waiting to hear from doc on his plan.

Has this happened to anyone? All my other IV courses were in response to severe exacerbations. It's weird to think of it as preventive or a stop-agent.

Is it just me? Or do others out there get IVs so that things don't go completely downhill. Mind you, my PFTs have been anywhere from 100%+ to 46%...to show you how "sick" I have been in the past.

 

[CFkitty]

My doc is thinking IVs, after 4 different antibiotics and prednisone over the past 3 weeks. New CT scans show pockets of inflammation "all over" (not localized). Nothing new growing on cultures, but due to inflammation, doc says that I might not be getting stuff out of those pockets to try to grow cultures.

Since I haven't had a noticeable response to any of the antibiotics or steroids, he is thinking IVs. Inflammation is what leads to scarring, which is what causes decrease in lung function.

So while I don't feel "horrible", I am sick with no improvement. I loathe the idea of IVs to prevent this from going further, but I'm nervous bc my last two PICCs ended up in blood clots. Without a PICC, I could be inpatient for the 2 weeks. Waiting to hear from doc on his plan.

Has this happened to anyone? All my other IV courses were in response to severe exacerbations. It's weird to think of it as preventive or a stop-agent.

Is it just me? Or do others out there get IVs so that things don't go completely downhill. Mind you, my PFTs have been anywhere from 100%+ to 46%...to show you how "sick" I have been in the past.

 

[CFkitty]

My doc is thinking IVs, after 4 different antibiotics and prednisone over the past 3 weeks. New CT scans show pockets of inflammation "all over" (not localized). Nothing new growing on cultures, but due to inflammation, doc says that I might not be getting stuff out of those pockets to try to grow cultures.

Since I haven't had a noticeable response to any of the antibiotics or steroids, he is thinking IVs. Inflammation is what leads to scarring, which is what causes decrease in lung function.

So while I don't feel "horrible", I am sick with no improvement. I loathe the idea of IVs to prevent this from going further, but I'm nervous bc my last two PICCs ended up in blood clots. Without a PICC, I could be inpatient for the 2 weeks. Waiting to hear from doc on his plan.

Has this happened to anyone? All my other IV courses were in response to severe exacerbations. It's weird to think of it as preventive or a stop-agent.

Is it just me? Or do others out there get IVs so that things don't go completely downhill. Mind you, my PFTs have been anywhere from 100%+ to 46%...to show you how "sick" I have been in the past.

 

[CFkitty]

My doc is thinking IVs, after 4 different antibiotics and prednisone over the past 3 weeks. New CT scans show pockets of inflammation "all over" (not localized). Nothing new growing on cultures, but due to inflammation, doc says that I might not be getting stuff out of those pockets to try to grow cultures.
<br />
<br />Since I haven't had a noticeable response to any of the antibiotics or steroids, he is thinking IVs. Inflammation is what leads to scarring, which is what causes decrease in lung function.
<br />
<br />So while I don't feel "horrible", I am sick with no improvement. I loathe the idea of IVs to prevent this from going further, but I'm nervous bc my last two PICCs ended up in blood clots. Without a PICC, I could be inpatient for the 2 weeks. Waiting to hear from doc on his plan.
<br />
<br />Has this happened to anyone? All my other IV courses were in response to severe exacerbations. It's weird to think of it as preventive or a stop-agent.
<br />
<br />Is it just me? Or do others out there get IVs so that things don't go completely downhill. Mind you, my PFTs have been anywhere from 100%+ to 46%...to show you how "sick" I have been in the past.

 

[Melissa75]

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.

I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?

I am sure someone will have a more comprehensive opinion...

Best wishes.

 

[Melissa75]

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.

I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?

I am sure someone will have a more comprehensive opinion...

Best wishes.

 

[Melissa75]

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.

I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?

I am sure someone will have a more comprehensive opinion...

Best wishes.

 

[Melissa75]

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.

I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?

I am sure someone will have a more comprehensive opinion...

Best wishes.

 

[Melissa75]

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.
<br />
<br />I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?
<br />
<br />I am sure someone will have a more comprehensive opinion...
<br />
<br />Best wishes.

 

[saveferris2009]

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.


<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog...008/08/allergies.html
</a>

NAC also helps to reduce inflammation:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog....com/search/label/NAC
</a>
And so does exercise:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a>

 

[saveferris2009]

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.


<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog...008/08/allergies.html
</a>

NAC also helps to reduce inflammation:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog....com/search/label/NAC
</a>
And so does exercise:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a>

 

[saveferris2009]

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.


<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog...008/08/allergies.html
</a>

NAC also helps to reduce inflammation:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog....com/search/label/NAC
</a>
And so does exercise:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a>

 

[saveferris2009]

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.


<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog...008/08/allergies.html
</a>

NAC also helps to reduce inflammation:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog....com/search/label/NAC
</a>
And so does exercise:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a>

 

[saveferris2009]

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog...008/08/allergies.html
</a><br />
<br />
<br />NAC also helps to reduce inflammation:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog....com/search/label/NAC
</a><br />
<br />And so does exercise:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a>

 

[CFkitty]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog.../allergies.html
</a>

NAC also helps to reduce inflammation:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog...earch/label/NAC
</a>

And so does exercise:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a></end quote></div>


I am on Flonase, Allegra and sinus rinses. I cannot take TOBI, pulmozyme or HS without hempopsyis. I don't know about acetalcystine.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Melissa75</b></i>

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.

I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?

I am sure someone will have a more comprehensive opinion...

Best wishes.</end quote></div>

He never mentioned a bronch, and I have never had one. I have had this type of CT result before, about 6 years ago but with different doctors (diff state) and I was extremely ill.

My doc is waiting for me to see my ENT since I recently had 5-part sinus surgery due to severe sinus infection/inflammation/deviated septum/polyps. I am in a holding pattern and it stinks.

Thanks for the suggestions. I won't know more until I see my ENT (who is kind of a jerk about add-on patients), so it may be a week. The usual CF stuff, I can handle, but these renegade infections with so many unknowns stress me out.

 

[CFkitty]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog.../allergies.html
</a>

NAC also helps to reduce inflammation:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog...earch/label/NAC
</a>

And so does exercise:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a></end quote></div>


I am on Flonase, Allegra and sinus rinses. I cannot take TOBI, pulmozyme or HS without hempopsyis. I don't know about acetalcystine.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Melissa75</b></i>

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.

I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?

I am sure someone will have a more comprehensive opinion...

Best wishes.</end quote></div>

He never mentioned a bronch, and I have never had one. I have had this type of CT result before, about 6 years ago but with different doctors (diff state) and I was extremely ill.

My doc is waiting for me to see my ENT since I recently had 5-part sinus surgery due to severe sinus infection/inflammation/deviated septum/polyps. I am in a holding pattern and it stinks.

Thanks for the suggestions. I won't know more until I see my ENT (who is kind of a jerk about add-on patients), so it may be a week. The usual CF stuff, I can handle, but these renegade infections with so many unknowns stress me out.

 

[CFkitty]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog.../allergies.html
</a>

NAC also helps to reduce inflammation:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog...earch/label/NAC
</a>

And so does exercise:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a></end quote></div>


I am on Flonase, Allegra and sinus rinses. I cannot take TOBI, pulmozyme or HS without hempopsyis. I don't know about acetalcystine.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Melissa75</b></i>

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.

I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?

I am sure someone will have a more comprehensive opinion...

Best wishes.</end quote></div>

He never mentioned a bronch, and I have never had one. I have had this type of CT result before, about 6 years ago but with different doctors (diff state) and I was extremely ill.

My doc is waiting for me to see my ENT since I recently had 5-part sinus surgery due to severe sinus infection/inflammation/deviated septum/polyps. I am in a holding pattern and it stinks.

Thanks for the suggestions. I won't know more until I see my ENT (who is kind of a jerk about add-on patients), so it may be a week. The usual CF stuff, I can handle, but these renegade infections with so many unknowns stress me out.

 

[CFkitty]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
">http://noexcusesnoexcuses.blog.../allergies.html
</a>

NAC also helps to reduce inflammation:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
">http://noexcusesnoexcuses.blog...earch/label/NAC
</a>

And so does exercise:

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a></end quote>


I am on Flonase, Allegra and sinus rinses. I cannot take TOBI, pulmozyme or HS without hempopsyis. I don't know about acetalcystine.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Melissa75</b></i>

Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.

I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?

I am sure someone will have a more comprehensive opinion...

Best wishes.</end quote>

He never mentioned a bronch, and I have never had one. I have had this type of CT result before, about 6 years ago but with different doctors (diff state) and I was extremely ill.

My doc is waiting for me to see my ENT since I recently had 5-part sinus surgery due to severe sinus infection/inflammation/deviated septum/polyps. I am in a holding pattern and it stinks.

Thanks for the suggestions. I won't know more until I see my ENT (who is kind of a jerk about add-on patients), so it may be a week. The usual CF stuff, I can handle, but these renegade infections with so many unknowns stress me out.

 

[CFkitty]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<br />
<br />I'd be in so much trouble if I didn't treat my allergies. It's definitely something to look in to.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/2008/08/allergies.html
<br />">http://noexcusesnoexcuses.blog.../allergies.html
<br /></a>
<br />
<br />NAC also helps to reduce inflammation:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/NAC
<br />">http://noexcusesnoexcuses.blog...earch/label/NAC
<br /></a>
<br />
<br />And so does exercise:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/Exercise">http://noexcusesnoexcuses.blog.../search/label/Exercise</a></end quote>
<br />
<br />
<br />I am on Flonase, Allegra and sinus rinses. I cannot take TOBI, pulmozyme or HS without hempopsyis. I don't know about acetalcystine.
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Melissa75</b></i>
<br />
<br />Bronchoscopy? I know this isn't always people's favorite procedure, what with possible contamination...etc., but if your doctor thinks you are hiding bad stuff in the pockets, it might be worth it.
<br />
<br />I have had a CT look like what you describe, I think, infiltrates/inflammation in all the lobes? They wondered if it was an autoimmune thing called BOOP, but I responded to abs. BOOP is treated with prednisone, which you say you didn't respond much to?
<br />
<br />I am sure someone will have a more comprehensive opinion...
<br />
<br />Best wishes.</end quote>
<br />
<br />He never mentioned a bronch, and I have never had one. I have had this type of CT result before, about 6 years ago but with different doctors (diff state) and I was extremely ill.
<br />
<br />My doc is waiting for me to see my ENT since I recently had 5-part sinus surgery due to severe sinus infection/inflammation/deviated septum/polyps. I am in a holding pattern and it stinks.
<br />
<br />Thanks for the suggestions. I won't know more until I see my ENT (who is kind of a jerk about add-on patients), so it may be a week. The usual CF stuff, I can handle, but these renegade infections with so many unknowns stress me out.