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JennifersHope
04-28-2009, 11:01 PM
Can anyone tell me if you are being treated for this, what your symptoms are, did you go on prednisone, the antifunal or what drug did you take for it...

Thanks

JennifersHope
04-28-2009, 11:01 PM
Can anyone tell me if you are being treated for this, what your symptoms are, did you go on prednisone, the antifunal or what drug did you take for it...

Thanks

JennifersHope
04-28-2009, 11:01 PM
Can anyone tell me if you are being treated for this, what your symptoms are, did you go on prednisone, the antifunal or what drug did you take for it...

Thanks

JennifersHope
04-28-2009, 11:01 PM
Can anyone tell me if you are being treated for this, what your symptoms are, did you go on prednisone, the antifunal or what drug did you take for it...

Thanks

JennifersHope
04-28-2009, 11:01 PM
Can anyone tell me if you are being treated for this, what your symptoms are, did you go on prednisone, the antifunal or what drug did you take for it...
<br />
<br />Thanks

saveferris2009
04-28-2009, 11:16 PM
i went to stanford for a 2nd opinion regarding ABPA...you can check out my blog for info such as the IgE specific test, etc etc.


go under the Stanford visit label <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-28-2009, 11:16 PM
i went to stanford for a 2nd opinion regarding ABPA...you can check out my blog for info such as the IgE specific test, etc etc.


go under the Stanford visit label <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-28-2009, 11:16 PM
i went to stanford for a 2nd opinion regarding ABPA...you can check out my blog for info such as the IgE specific test, etc etc.


go under the Stanford visit label <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-28-2009, 11:16 PM
i went to stanford for a 2nd opinion regarding ABPA...you can check out my blog for info such as the IgE specific test, etc etc.


go under the Stanford visit label <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-28-2009, 11:16 PM
i went to stanford for a 2nd opinion regarding ABPA...you can check out my blog for info such as the IgE specific test, etc etc.
<br />
<br />
<br />go under the Stanford visit label <img src="i/expressions/face-icon-small-smile.gif" border="0">

TonyaH
04-28-2009, 11:20 PM
Hi Jennifer,
I think it depends on wether or not you have been diagnosed with ABPA. If your body has no allergic response to the aspergillus, sometimes it is just watched closely. Some, like my son, have ABPA (allergic bronchopulmonary aspergillosis), and require low dose prednisone as a maintenance med. We have not done antifungals yet, but it's nice to know they are there if/when we need them.
Andrew's symptoms were a combination of good old fashion lung exacerbation mixed with allergy symptoms. The prednisone has done a world of good for him, and his pfts have rebounded nicely.
An IgE level from your blood work can help diagnose ABPA. Have you had that done? Take Care!

TonyaH
04-28-2009, 11:20 PM
Hi Jennifer,
I think it depends on wether or not you have been diagnosed with ABPA. If your body has no allergic response to the aspergillus, sometimes it is just watched closely. Some, like my son, have ABPA (allergic bronchopulmonary aspergillosis), and require low dose prednisone as a maintenance med. We have not done antifungals yet, but it's nice to know they are there if/when we need them.
Andrew's symptoms were a combination of good old fashion lung exacerbation mixed with allergy symptoms. The prednisone has done a world of good for him, and his pfts have rebounded nicely.
An IgE level from your blood work can help diagnose ABPA. Have you had that done? Take Care!

TonyaH
04-28-2009, 11:20 PM
Hi Jennifer,
I think it depends on wether or not you have been diagnosed with ABPA. If your body has no allergic response to the aspergillus, sometimes it is just watched closely. Some, like my son, have ABPA (allergic bronchopulmonary aspergillosis), and require low dose prednisone as a maintenance med. We have not done antifungals yet, but it's nice to know they are there if/when we need them.
Andrew's symptoms were a combination of good old fashion lung exacerbation mixed with allergy symptoms. The prednisone has done a world of good for him, and his pfts have rebounded nicely.
An IgE level from your blood work can help diagnose ABPA. Have you had that done? Take Care!

TonyaH
04-28-2009, 11:20 PM
Hi Jennifer,
I think it depends on wether or not you have been diagnosed with ABPA. If your body has no allergic response to the aspergillus, sometimes it is just watched closely. Some, like my son, have ABPA (allergic bronchopulmonary aspergillosis), and require low dose prednisone as a maintenance med. We have not done antifungals yet, but it's nice to know they are there if/when we need them.
Andrew's symptoms were a combination of good old fashion lung exacerbation mixed with allergy symptoms. The prednisone has done a world of good for him, and his pfts have rebounded nicely.
An IgE level from your blood work can help diagnose ABPA. Have you had that done? Take Care!

TonyaH
04-28-2009, 11:20 PM
Hi Jennifer,
<br />I think it depends on wether or not you have been diagnosed with ABPA. If your body has no allergic response to the aspergillus, sometimes it is just watched closely. Some, like my son, have ABPA (allergic bronchopulmonary aspergillosis), and require low dose prednisone as a maintenance med. We have not done antifungals yet, but it's nice to know they are there if/when we need them.
<br />Andrew's symptoms were a combination of good old fashion lung exacerbation mixed with allergy symptoms. The prednisone has done a world of good for him, and his pfts have rebounded nicely.
<br />An IgE level from your blood work can help diagnose ABPA. Have you had that done? Take Care!

lexisangels05
04-28-2009, 11:25 PM
What is Aspergillus and how do you contract this?

lexisangels05
04-28-2009, 11:25 PM
What is Aspergillus and how do you contract this?

lexisangels05
04-28-2009, 11:25 PM
What is Aspergillus and how do you contract this?

lexisangels05
04-28-2009, 11:25 PM
What is Aspergillus and how do you contract this?

lexisangels05
04-28-2009, 11:25 PM
What is Aspergillus and how do you contract this?

saveferris2009
04-28-2009, 11:33 PM
just googled aspergillus for you


here's what came up


<a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?q=Aspergillus&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US<img">http://www.google.com/search?q...=org.mozilla:en-US<img</a> src="i/expressions/face-icon-small-blush.gif" border="0">fficial&client=firefox-a

saveferris2009
04-28-2009, 11:33 PM
just googled aspergillus for you


here's what came up


<a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?q=Aspergillus&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US<img">http://www.google.com/search?q...=org.mozilla:en-US<img</a> src="i/expressions/face-icon-small-blush.gif" border="0">fficial&client=firefox-a

saveferris2009
04-28-2009, 11:33 PM
just googled aspergillus for you


here's what came up


<a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?q=Aspergillus&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US<img">http://www.google.com/search?q...=org.mozilla:en-US<img</a> src="i/expressions/face-icon-small-blush.gif" border="0">fficial&client=firefox-a

saveferris2009
04-28-2009, 11:33 PM
just googled aspergillus for you


here's what came up


<a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?q=Aspergillus&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US<img">http://www.google.com/search?q...=org.mozilla:en-US<img</a> src="i/expressions/face-icon-small-blush.gif" border="0">fficial&client=firefox-a

saveferris2009
04-28-2009, 11:33 PM
just googled aspergillus for you
<br />
<br />
<br />here's what came up
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.google.com/search?q=Aspergillus&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US<img">http://www.google.com/search?q...=org.mozilla:en-US<img</a> src="i/expressions/face-icon-small-blush.gif" border="0">fficial&client=firefox-a

JennifersHope
04-28-2009, 11:42 PM
Thanks .. I actually have googled it and read up on it.. I am looking for personal stories on it.. They are beginning to this I have the ABPA... I have been on so much antibiotics and I am not getting better.. only when I am on high doses of prednisone and soon as I come off of it wham.. I am sick.....

I have been on prednisone for so long that we my IGG is not really showing anything and who knows if it is a false negative...

They are also ruling out a latex allergy, wouldn't that be a kick in the butt, being a nurse and all.. yeash....

But for now I am hopeful, because I got a long acting steroid shot today and I can reduce my prednisone tomorrow and I am starting an antifungal next week...

I am so hopeful that this is going to give me the boost i need to feel better. I honestly don't remember what that feels like....

Thanks for the replies, if anyone else has experience please let me know

JennifersHope
04-28-2009, 11:42 PM
Thanks .. I actually have googled it and read up on it.. I am looking for personal stories on it.. They are beginning to this I have the ABPA... I have been on so much antibiotics and I am not getting better.. only when I am on high doses of prednisone and soon as I come off of it wham.. I am sick.....

I have been on prednisone for so long that we my IGG is not really showing anything and who knows if it is a false negative...

They are also ruling out a latex allergy, wouldn't that be a kick in the butt, being a nurse and all.. yeash....

But for now I am hopeful, because I got a long acting steroid shot today and I can reduce my prednisone tomorrow and I am starting an antifungal next week...

I am so hopeful that this is going to give me the boost i need to feel better. I honestly don't remember what that feels like....

Thanks for the replies, if anyone else has experience please let me know

JennifersHope
04-28-2009, 11:42 PM
Thanks .. I actually have googled it and read up on it.. I am looking for personal stories on it.. They are beginning to this I have the ABPA... I have been on so much antibiotics and I am not getting better.. only when I am on high doses of prednisone and soon as I come off of it wham.. I am sick.....

I have been on prednisone for so long that we my IGG is not really showing anything and who knows if it is a false negative...

They are also ruling out a latex allergy, wouldn't that be a kick in the butt, being a nurse and all.. yeash....

But for now I am hopeful, because I got a long acting steroid shot today and I can reduce my prednisone tomorrow and I am starting an antifungal next week...

I am so hopeful that this is going to give me the boost i need to feel better. I honestly don't remember what that feels like....

Thanks for the replies, if anyone else has experience please let me know

JennifersHope
04-28-2009, 11:42 PM
Thanks .. I actually have googled it and read up on it.. I am looking for personal stories on it.. They are beginning to this I have the ABPA... I have been on so much antibiotics and I am not getting better.. only when I am on high doses of prednisone and soon as I come off of it wham.. I am sick.....

I have been on prednisone for so long that we my IGG is not really showing anything and who knows if it is a false negative...

They are also ruling out a latex allergy, wouldn't that be a kick in the butt, being a nurse and all.. yeash....

But for now I am hopeful, because I got a long acting steroid shot today and I can reduce my prednisone tomorrow and I am starting an antifungal next week...

I am so hopeful that this is going to give me the boost i need to feel better. I honestly don't remember what that feels like....

Thanks for the replies, if anyone else has experience please let me know

JennifersHope
04-28-2009, 11:42 PM
Thanks .. I actually have googled it and read up on it.. I am looking for personal stories on it.. They are beginning to this I have the ABPA... I have been on so much antibiotics and I am not getting better.. only when I am on high doses of prednisone and soon as I come off of it wham.. I am sick.....
<br />
<br />I have been on prednisone for so long that we my IGG is not really showing anything and who knows if it is a false negative...
<br />
<br />They are also ruling out a latex allergy, wouldn't that be a kick in the butt, being a nurse and all.. yeash....
<br />
<br />But for now I am hopeful, because I got a long acting steroid shot today and I can reduce my prednisone tomorrow and I am starting an antifungal next week...
<br />
<br />I am so hopeful that this is going to give me the boost i need to feel better. I honestly don't remember what that feels like....
<br />
<br />Thanks for the replies, if anyone else has experience please let me know

JennifersHope
04-28-2009, 11:43 PM
Amy can you link me to your blog?

JennifersHope
04-28-2009, 11:43 PM
Amy can you link me to your blog?

JennifersHope
04-28-2009, 11:43 PM
Amy can you link me to your blog?

JennifersHope
04-28-2009, 11:43 PM
Amy can you link me to your blog?

JennifersHope
04-28-2009, 11:43 PM
Amy can you link me to your blog?

saveferris2009
04-29-2009, 12:03 AM
it's at the bottom of my signature <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-29-2009, 12:03 AM
it's at the bottom of my signature <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-29-2009, 12:03 AM
it's at the bottom of my signature <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-29-2009, 12:03 AM
it's at the bottom of my signature <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-29-2009, 12:03 AM
it's at the bottom of my signature <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-29-2009, 12:06 AM
sorry the google link wasn't for you, Jen, it was for Melissa's questions

saveferris2009
04-29-2009, 12:06 AM
sorry the google link wasn't for you, Jen, it was for Melissa's questions

saveferris2009
04-29-2009, 12:06 AM
sorry the google link wasn't for you, Jen, it was for Melissa's questions

saveferris2009
04-29-2009, 12:06 AM
sorry the google link wasn't for you, Jen, it was for Melissa's questions

saveferris2009
04-29-2009, 12:06 AM
sorry the google link wasn't for you, Jen, it was for Melissa's questions

dirtbike32883333
04-29-2009, 02:51 AM
i got diagnosed after my transplant from bronchoscopy biopsy. They treated me with the antifungal Vfend and have been on it ever since. Vfend is expensive but is suppose to work great with minimal side/toxic effects. I have not had any reoccurence since using it.

dirtbike32883333
04-29-2009, 02:51 AM
i got diagnosed after my transplant from bronchoscopy biopsy. They treated me with the antifungal Vfend and have been on it ever since. Vfend is expensive but is suppose to work great with minimal side/toxic effects. I have not had any reoccurence since using it.

dirtbike32883333
04-29-2009, 02:51 AM
i got diagnosed after my transplant from bronchoscopy biopsy. They treated me with the antifungal Vfend and have been on it ever since. Vfend is expensive but is suppose to work great with minimal side/toxic effects. I have not had any reoccurence since using it.

dirtbike32883333
04-29-2009, 02:51 AM
i got diagnosed after my transplant from bronchoscopy biopsy. They treated me with the antifungal Vfend and have been on it ever since. Vfend is expensive but is suppose to work great with minimal side/toxic effects. I have not had any reoccurence since using it.

dirtbike32883333
04-29-2009, 02:51 AM
i got diagnosed after my transplant from bronchoscopy biopsy. They treated me with the antifungal Vfend and have been on it ever since. Vfend is expensive but is suppose to work great with minimal side/toxic effects. I have not had any reoccurence since using it.

kirstynkoffs
04-29-2009, 04:09 AM
Arhh this is so timely! I have just been allergy tested (thanks to the help and wisdom gained from this site!!!) and it has come back with a severe allergy to aspergillius! I have had a constant infections for the last 6 months and the only thing that seems to help is pred. When i talked to my doctor about it he said that my cultures didn't show that i am growing it but is it possible that they have missed something and this is what is causing all my sickness???

My doctor was really hesitant to refer me to someone to do allergy testing and it seems he is of the opinion that my ill health is due to the natural progression of cf...

JennifersHope: I totally understand what its like to not remember what well feels like - keep on hanging in there!
Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!

kirstynkoffs
04-29-2009, 04:09 AM
Arhh this is so timely! I have just been allergy tested (thanks to the help and wisdom gained from this site!!!) and it has come back with a severe allergy to aspergillius! I have had a constant infections for the last 6 months and the only thing that seems to help is pred. When i talked to my doctor about it he said that my cultures didn't show that i am growing it but is it possible that they have missed something and this is what is causing all my sickness???

My doctor was really hesitant to refer me to someone to do allergy testing and it seems he is of the opinion that my ill health is due to the natural progression of cf...

JennifersHope: I totally understand what its like to not remember what well feels like - keep on hanging in there!
Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!

kirstynkoffs
04-29-2009, 04:09 AM
Arhh this is so timely! I have just been allergy tested (thanks to the help and wisdom gained from this site!!!) and it has come back with a severe allergy to aspergillius! I have had a constant infections for the last 6 months and the only thing that seems to help is pred. When i talked to my doctor about it he said that my cultures didn't show that i am growing it but is it possible that they have missed something and this is what is causing all my sickness???

My doctor was really hesitant to refer me to someone to do allergy testing and it seems he is of the opinion that my ill health is due to the natural progression of cf...

JennifersHope: I totally understand what its like to not remember what well feels like - keep on hanging in there!
Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!

kirstynkoffs
04-29-2009, 04:09 AM
Arhh this is so timely! I have just been allergy tested (thanks to the help and wisdom gained from this site!!!) and it has come back with a severe allergy to aspergillius! I have had a constant infections for the last 6 months and the only thing that seems to help is pred. When i talked to my doctor about it he said that my cultures didn't show that i am growing it but is it possible that they have missed something and this is what is causing all my sickness???

My doctor was really hesitant to refer me to someone to do allergy testing and it seems he is of the opinion that my ill health is due to the natural progression of cf...

JennifersHope: I totally understand what its like to not remember what well feels like - keep on hanging in there!
Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!

kirstynkoffs
04-29-2009, 04:09 AM
Arhh this is so timely! I have just been allergy tested (thanks to the help and wisdom gained from this site!!!) and it has come back with a severe allergy to aspergillius! I have had a constant infections for the last 6 months and the only thing that seems to help is pred. When i talked to my doctor about it he said that my cultures didn't show that i am growing it but is it possible that they have missed something and this is what is causing all my sickness???
<br />
<br />My doctor was really hesitant to refer me to someone to do allergy testing and it seems he is of the opinion that my ill health is due to the natural progression of cf...
<br />
<br />JennifersHope: I totally understand what its like to not remember what well feels like - keep on hanging in there!
<br />Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!

marla
04-29-2009, 06:51 AM
My son was diagnosed with ABPA. At first, he took prednisone and a anti-fungal medicine. The prednisone caused major swelling of his face. Because of that, he was switched to solumedrol through his port three days a month. We've had good results. His pfts are up and he's coughing less.

marla
04-29-2009, 06:51 AM
My son was diagnosed with ABPA. At first, he took prednisone and a anti-fungal medicine. The prednisone caused major swelling of his face. Because of that, he was switched to solumedrol through his port three days a month. We've had good results. His pfts are up and he's coughing less.

marla
04-29-2009, 06:51 AM
My son was diagnosed with ABPA. At first, he took prednisone and a anti-fungal medicine. The prednisone caused major swelling of his face. Because of that, he was switched to solumedrol through his port three days a month. We've had good results. His pfts are up and he's coughing less.

marla
04-29-2009, 06:51 AM
My son was diagnosed with ABPA. At first, he took prednisone and a anti-fungal medicine. The prednisone caused major swelling of his face. Because of that, he was switched to solumedrol through his port three days a month. We've had good results. His pfts are up and he's coughing less.

marla
04-29-2009, 06:51 AM
My son was diagnosed with ABPA. At first, he took prednisone and a anti-fungal medicine. The prednisone caused major swelling of his face. Because of that, he was switched to solumedrol through his port three days a month. We've had good results. His pfts are up and he's coughing less.

Marjolein
04-29-2009, 07:37 AM
I was diagnosed with Aspergillus 4 weeks post transplant.
I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.

They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.

Marjolein
04-29-2009, 07:37 AM
I was diagnosed with Aspergillus 4 weeks post transplant.
I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.

They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.

Marjolein
04-29-2009, 07:37 AM
I was diagnosed with Aspergillus 4 weeks post transplant.
I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.

They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.

Marjolein
04-29-2009, 07:37 AM
I was diagnosed with Aspergillus 4 weeks post transplant.
I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.

They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.

Marjolein
04-29-2009, 07:37 AM
I was diagnosed with Aspergillus 4 weeks post transplant.
<br />I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.
<br />
<br />They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.

mom2lillian
04-29-2009, 08:56 AM
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.

My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).

You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.

MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.

Sorry you are having to go through this

mom2lillian
04-29-2009, 08:56 AM
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.

My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).

You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.

MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.

Sorry you are having to go through this

mom2lillian
04-29-2009, 08:56 AM
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.

My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).

You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.

MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.

Sorry you are having to go through this

mom2lillian
04-29-2009, 08:56 AM
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.

My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).

You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.

MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.

Sorry you are having to go through this

mom2lillian
04-29-2009, 08:56 AM
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.
<br />
<br />My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).
<br />
<br />You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.
<br />
<br />MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><br /><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.
<br />
<br />Sorry you are having to go through this

saveferris2009
04-29-2009, 11:10 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>


Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote></div>

my pleasure. i'm so glad you found it helpful

saveferris2009
04-29-2009, 11:10 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>


Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote></div>

my pleasure. i'm so glad you found it helpful

saveferris2009
04-29-2009, 11:10 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>


Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote></div>

my pleasure. i'm so glad you found it helpful

saveferris2009
04-29-2009, 11:10 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>


Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote>

my pleasure. i'm so glad you found it helpful

saveferris2009
04-29-2009, 11:10 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>
<br />
<br />
<br />Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote>
<br />
<br />my pleasure. i'm so glad you found it helpful

musclemania70
04-30-2009, 12:19 AM
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.

musclemania70
04-30-2009, 12:19 AM
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.

musclemania70
04-30-2009, 12:19 AM
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.

musclemania70
04-30-2009, 12:19 AM
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.

musclemania70
04-30-2009, 12:19 AM
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.

saveferris2009
04-30-2009, 12:39 AM
insurance covers the visits <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-30-2009, 12:39 AM
insurance covers the visits <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-30-2009, 12:39 AM
insurance covers the visits <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-30-2009, 12:39 AM
insurance covers the visits <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
04-30-2009, 12:39 AM
insurance covers the visits <img src="i/expressions/face-icon-small-smile.gif" border="0">