Allergic Bronchopulmonary Aspergillosis

Posted by gretchenm @gretchenm, Mar 13, 2012

I would like to hear from anywho who has this condition and what treatment has worked. Would you recommend and allergist, a pulmonologist, or an infectious disease doctor? I am tired of being passed around and doctors not really understanding the condition.

Interested in more discussions like this? Go to the Infectious Diseases group.

I am seeing pulmonary doctor for the last year. not sure this is the best route either. I am doing a 10mg of prednisone per day with Gabapentin 300mg 2 times daily and a nebulizer with perforomist and a steroid Budesonide 5mg once daily. My IgE serum level a year ago was 1834 two weeks ago it was up to 1870.
never ever had a problem till about two years ago. noticed a wheez but when I asked my MD about it at the time he commented "you can make yourself wheez". Needless to say he is no longer my MD! I also would like to have more information as I too was diagnosed with ABPA. Just hard for me to believe that at 68 I developed this after years of nothing like this.

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Hi, John. One thing I recently did was had a sophisticated blood test that tested for everything I am allergic to. It came up with about 40 different things, most of which I did not realize I was allergic to. If you did this test, then it could confirm the aspergillous allergy for you. At least you would have confirmation that you really have it and not wonder why at your age it cropped up. The other thing is if you are on Facebook, there are a few aspergillous support groups. If you need links, write again. Thank you.

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@gretchenm

Hi, John. One thing I recently did was had a sophisticated blood test that tested for everything I am allergic to. It came up with about 40 different things, most of which I did not realize I was allergic to. If you did this test, then it could confirm the aspergillous allergy for you. At least you would have confirmation that you really have it and not wonder why at your age it cropped up. The other thing is if you are on Facebook, there are a few aspergillous support groups. If you need links, write again. Thank you.

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Getchen I would appreciate the links please to some of the support groups.thanks john t

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@gretchenm

Hi, John. One thing I recently did was had a sophisticated blood test that tested for everything I am allergic to. It came up with about 40 different things, most of which I did not realize I was allergic to. If you did this test, then it could confirm the aspergillous allergy for you. At least you would have confirmation that you really have it and not wonder why at your age it cropped up. The other thing is if you are on Facebook, there are a few aspergillous support groups. If you need links, write again. Thank you.

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Hi,John. On Facebook, there are two groups, one public and one private. Search for Aspergillosis Support, the moderator is a doctor in England named Graham Atherton. Both groups are called Aspergillosis Support, with one having (Private) after the name. It is so what you post can be private if you want, namely in a closed group. Good luck with getting your questions answered. Gretchen

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@john1948

I am seeing pulmonary doctor for the last year. not sure this is the best route either. I am doing a 10mg of prednisone per day with Gabapentin 300mg 2 times daily and a nebulizer with perforomist and a steroid Budesonide 5mg once daily. My IgE serum level a year ago was 1834 two weeks ago it was up to 1870.
never ever had a problem till about two years ago. noticed a wheez but when I asked my MD about it at the time he commented "you can make yourself wheez". Needless to say he is no longer my MD! I also would like to have more information as I too was diagnosed with ABPA. Just hard for me to believe that at 68 I developed this after years of nothing like this.

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Hi John…I had problems in 2016 breathing and coughing for 6 months and they saw a mass in an xray on my upper right lobe. Two months later it had shrunk and I could breath fine. A week ago I was making a garden and within hours could not breath. Starting predisone for just a few days now that the doctors connected the dots. They did not tell me about abpa 2 yrs ago..lol. I am a VEGAN and I am heavily researching how to naturally clean and restore my lungs. What part of the country do you live?

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@john1948

I am seeing pulmonary doctor for the last year. not sure this is the best route either. I am doing a 10mg of prednisone per day with Gabapentin 300mg 2 times daily and a nebulizer with perforomist and a steroid Budesonide 5mg once daily. My IgE serum level a year ago was 1834 two weeks ago it was up to 1870.
never ever had a problem till about two years ago. noticed a wheez but when I asked my MD about it at the time he commented "you can make yourself wheez". Needless to say he is no longer my MD! I also would like to have more information as I too was diagnosed with ABPA. Just hard for me to believe that at 68 I developed this after years of nothing like this.

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Strange..mine developed two years ago also. I am almost 64. I think mine came from gardening or an air conditioning unit when I was visiting Florida.

REPLY
@gretchenm

Hi, John. One thing I recently did was had a sophisticated blood test that tested for everything I am allergic to. It came up with about 40 different things, most of which I did not realize I was allergic to. If you did this test, then it could confirm the aspergillous allergy for you. At least you would have confirmation that you really have it and not wonder why at your age it cropped up. The other thing is if you are on Facebook, there are a few aspergillous support groups. If you need links, write again. Thank you.

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I am in the facebook groups. Just search abpa on facebook and they will come up.

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@john1948

I am seeing pulmonary doctor for the last year. not sure this is the best route either. I am doing a 10mg of prednisone per day with Gabapentin 300mg 2 times daily and a nebulizer with perforomist and a steroid Budesonide 5mg once daily. My IgE serum level a year ago was 1834 two weeks ago it was up to 1870.
never ever had a problem till about two years ago. noticed a wheez but when I asked my MD about it at the time he commented "you can make yourself wheez". Needless to say he is no longer my MD! I also would like to have more information as I too was diagnosed with ABPA. Just hard for me to believe that at 68 I developed this after years of nothing like this.

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Kansas city mo

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@john1948

I am seeing pulmonary doctor for the last year. not sure this is the best route either. I am doing a 10mg of prednisone per day with Gabapentin 300mg 2 times daily and a nebulizer with perforomist and a steroid Budesonide 5mg once daily. My IgE serum level a year ago was 1834 two weeks ago it was up to 1870.
never ever had a problem till about two years ago. noticed a wheez but when I asked my MD about it at the time he commented "you can make yourself wheez". Needless to say he is no longer my MD! I also would like to have more information as I too was diagnosed with ABPA. Just hard for me to believe that at 68 I developed this after years of nothing like this.

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We took a trip to gulf shores two years ago soon after that is when mine developed

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Hello to this group. I have had aspergillosis in my lungs for years. The past spring my symptoms became much worse. I have an appointment with an allergist in a few weeks to determine if it is ABPA. I'm looking for info on the difference between aspergillosis that has colonized in the lung and ABPA. Can anyone give me info? Thanks in advance.

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@dc1950

Hello to this group. I have had aspergillosis in my lungs for years. The past spring my symptoms became much worse. I have an appointment with an allergist in a few weeks to determine if it is ABPA. I'm looking for info on the difference between aspergillosis that has colonized in the lung and ABPA. Can anyone give me info? Thanks in advance.

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I’m tagging @sueinmn to see if she has any info about the difference between aspergillosis and ABPA.

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