Need asperilligos information please im beginning to wander if i have this

J

JustDucky

New member
Wonderful information.....As far as yeast goes, I know it has gone systemic with me at times especially whenever I am on high dose, multiple antibiotics. Thankfully, the ID doc treats that as well because I do get symptomatic, it messes with my immune system big time.
Carly, definitely look into sinus problems....a raging infection there most certainly can settle into the lungs and just keep re-infecting them. I am amazed that they haven't done a CT scan on them just for baseline purposes even. But because you have symptoms ie. weird smell, pressure, vision issues etc, you should really ask that they look into it. On a personal note, a few years ago, I kept having terrible migraine type headaches and pressure in my sinuses despite aggressive treatment (neti pot with antibiotics) and so my ENT scraped my sinuses and cultured what was there. Turned out that I had a raging fungal infection in my sinuses! I was treated with large doses of antifungals and that helped, along with removing the offending fungal ball. Interestingly, that same fungus was also found in my lungs, so the infection made it's way down there from my sinuses.

I forgot if I asked this already, but have they looked into MAC? For completeness sake, they should culture for everything. I have had to be bronched to get good samples and found that my cultures from my bronch were different from what I coughed/suctioned up. Bugs that were missed from my coughed up sample were found in the bronch's sample....such as steno and even cepacia. They seem to hide in my lower lobes. The point of this story is that maybe they should bronch you if you aren't bouncing back despite aggressive treatment to make sure nothing is being missed.

Jenn 40 w/CF
 
J

JustDucky

New member
Wonderful information.....As far as yeast goes, I know it has gone systemic with me at times especially whenever I am on high dose, multiple antibiotics. Thankfully, the ID doc treats that as well because I do get symptomatic, it messes with my immune system big time.
Carly, definitely look into sinus problems....a raging infection there most certainly can settle into the lungs and just keep re-infecting them. I am amazed that they haven't done a CT scan on them just for baseline purposes even. But because you have symptoms ie. weird smell, pressure, vision issues etc, you should really ask that they look into it. On a personal note, a few years ago, I kept having terrible migraine type headaches and pressure in my sinuses despite aggressive treatment (neti pot with antibiotics) and so my ENT scraped my sinuses and cultured what was there. Turned out that I had a raging fungal infection in my sinuses! I was treated with large doses of antifungals and that helped, along with removing the offending fungal ball. Interestingly, that same fungus was also found in my lungs, so the infection made it's way down there from my sinuses.

I forgot if I asked this already, but have they looked into MAC? For completeness sake, they should culture for everything. I have had to be bronched to get good samples and found that my cultures from my bronch were different from what I coughed/suctioned up. Bugs that were missed from my coughed up sample were found in the bronch's sample....such as steno and even cepacia. They seem to hide in my lower lobes. The point of this story is that maybe they should bronch you if you aren't bouncing back despite aggressive treatment to make sure nothing is being missed.

Jenn 40 w/CF
 
D

dramamama

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i> Did your doc explain how you were having a massive allergic reaction, but failed to produce immunologic markers? I'm interested in the pathology of your case. Was your IgE a serum IgE? Was a RAST and ASP specific IgE done? My interest is because in the past I was having what seemed to be a pulmonary exacerbation, but there was no obvious infection. I did culture Aspergillus, however all 3 tests did not indicate any large immunologic response and I was not treated. It was chalked up to a viral infection and I eventually recovered on my own. My question, I suppose, is since there is debate over whether serum IgE is sufficient to declare ABPA and what level it needs to be, is it possible that your case was missed because you did not have the RAST or ASP specific IgE. Or, did you have those and it was still missed and perhaps mine was missed as well.</end quote>

After everything I have been through, I would never discount strange or different symptoms and new culturing of specific molds.

Well, things were a bit in the dark ages then, but I did have the whole battery of tests...allergy testing and blood testing. I don't remember RAST, but know I had IgE specific to aspergillus and showed nothing out of ordinary. I wish I paid more attention back then, but I was so sick that all I did was listen to the diagnosis. I was having 106 fevers (normal to 106 back to normal within 3 hours) every day for close to 5 months.
What they finally decided was that I was allergic to all molds and yeasts, based on testing and that it was most likely ABPA based on results of those tests....I wish I could remember doctor's name, but he had "never seen anything like it." I think they assumed I was colonized some where, but they just couldn't find it. They put me through 2 bronchs in several months thinking they would find aspergillus and or mold....never happened. I continued to have fevers until I moved out of the dorms and suddenly stopped having any issues..within a few weeks. When I moved back into the smu dorms (I taught cheerleading camps and we stayed in dorms all over the country) the fever came back after several days. At that point all the docs agreed it was most likley an allergic IgG mediated response to aspergillus....again the tests were not conclusive for APBA, but that was the conclusion.
I have only cultured aspergillus once and that was 4 years ago for a few weeks. I was having more constriction and asked my doc for a culture bc I knew the feeling. We treated it and it never returned. Praise God!
Several years ago, my allergist wanted to start treating for allergy bc they did the drops rather than shots. I had all the normal molds and grasses in the drops bc I was the "most allergic patient the had ever seen at the office." That was based on arm test... My allergist tested me for many of those allergens in my blood test but they came back not sensitive...weird. At any rate, when I got to Denver and my pfts were a little off, my CF doc was like, "stop the drops immediately." I was confused bc so many docs had told me to treat allergies with shots/drops etc. He said, no way. Cfers have crazy immune response and you never know how we will react to an allergen. I went off drops and felt so much better.
When i have a food allergy, it always affects me several days later....which is IgG not IgE response. And, yet, when I took xolair I had no food allergies. However, I did become sensitized to xolair and began having IgG response to that!!! and had to quit it :-(
Sorry if my response doesn't really help...
 
D

dramamama

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i> Did your doc explain how you were having a massive allergic reaction, but failed to produce immunologic markers? I'm interested in the pathology of your case. Was your IgE a serum IgE? Was a RAST and ASP specific IgE done? My interest is because in the past I was having what seemed to be a pulmonary exacerbation, but there was no obvious infection. I did culture Aspergillus, however all 3 tests did not indicate any large immunologic response and I was not treated. It was chalked up to a viral infection and I eventually recovered on my own. My question, I suppose, is since there is debate over whether serum IgE is sufficient to declare ABPA and what level it needs to be, is it possible that your case was missed because you did not have the RAST or ASP specific IgE. Or, did you have those and it was still missed and perhaps mine was missed as well.</end quote>

After everything I have been through, I would never discount strange or different symptoms and new culturing of specific molds.

Well, things were a bit in the dark ages then, but I did have the whole battery of tests...allergy testing and blood testing. I don't remember RAST, but know I had IgE specific to aspergillus and showed nothing out of ordinary. I wish I paid more attention back then, but I was so sick that all I did was listen to the diagnosis. I was having 106 fevers (normal to 106 back to normal within 3 hours) every day for close to 5 months.
What they finally decided was that I was allergic to all molds and yeasts, based on testing and that it was most likely ABPA based on results of those tests....I wish I could remember doctor's name, but he had "never seen anything like it." I think they assumed I was colonized some where, but they just couldn't find it. They put me through 2 bronchs in several months thinking they would find aspergillus and or mold....never happened. I continued to have fevers until I moved out of the dorms and suddenly stopped having any issues..within a few weeks. When I moved back into the smu dorms (I taught cheerleading camps and we stayed in dorms all over the country) the fever came back after several days. At that point all the docs agreed it was most likley an allergic IgG mediated response to aspergillus....again the tests were not conclusive for APBA, but that was the conclusion.
I have only cultured aspergillus once and that was 4 years ago for a few weeks. I was having more constriction and asked my doc for a culture bc I knew the feeling. We treated it and it never returned. Praise God!
Several years ago, my allergist wanted to start treating for allergy bc they did the drops rather than shots. I had all the normal molds and grasses in the drops bc I was the "most allergic patient the had ever seen at the office." That was based on arm test... My allergist tested me for many of those allergens in my blood test but they came back not sensitive...weird. At any rate, when I got to Denver and my pfts were a little off, my CF doc was like, "stop the drops immediately." I was confused bc so many docs had told me to treat allergies with shots/drops etc. He said, no way. Cfers have crazy immune response and you never know how we will react to an allergen. I went off drops and felt so much better.
When i have a food allergy, it always affects me several days later....which is IgG not IgE response. And, yet, when I took xolair I had no food allergies. However, I did become sensitized to xolair and began having IgG response to that!!! and had to quit it :-(
Sorry if my response doesn't really help...
 
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