#1 ·
I’ll start by attaching a photo of the butterfly rash I had, and then I’ll list all the "issues" I've been dealing with since 2003...
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These blisters popped up after I spent about six hours playing beach volleyball in the sun—it wasn't my first time out, even though I don't play that often, and I'm not usually that sensitive to UV exposure—back in June.
When I ended up in the hospital in July (due to some inflamed lymph nodes), things flared up significantly; it was extremely red and swollen. Once my fever started breaking, it calmed down and returned to its previous state—just some redness, but nothing intense... It seemed to be improving over a couple of weeks, but then suddenly, everything flared up again, and stayed that way until three weeks ago.
To the touch, it felt slightly swollen, and since this had been going on for three months, it was gradually increasing, though not at an extreme speed.
Here is a photo of how it looked when it was relatively okay—you can't see much, but there was still some swelling. I had this on both sides of my face. The left side was milder, while the right side was quite pronounced.

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I finally saw a dermatologist after two months because the symptoms just wouldn't subside.
The test results I received are listed below...
Demodex Foll. came back negative—if I wrote that correctly...
Positive for P. oval (several instances)

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My second dermatology appointment was after I got those last results, and by then, the redness had actually calmed down for about two weeks...
The dermatologist's take was that I have seborrheic dermatitis—a genetic condition (though as far as I know from looking at my family, nobody else has ever dealt with it)—and they prescribed a cream for me to use if it flares up again...
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So, here's the thing...
A few days ago, I was at the beach, went for a swim, and then laid out on a lounge chair and fell asleep. I was out in the sun for maybe half an hour (it was around 4 or 5 PM), and as soon as I woke up, I could feel it coming back... specifically, this sensation on my face that just feels "off."
That area is turning red again, and the blisters have reappeared...
I've actually had a sun allergy since 2002. Specifically, on my hands and the lower part of my legs. Since that first occurrence, the issues have only happened in those areas, and I do spend quite a bit of time in the sun (though obviously, I'm careful about those specific spots).
I wonder if I've developed a sun allergy on my face as well. How would I even check for that? My dermatologist didn't mention that as an option...
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Health issues since 2003:
2003 to present —even though it hasn't been as bad the last four years (since I have a "lighter" physical job now), I've dealt with pain in my right abdomen. Terrible pain, and no one could figure out the cause. I spent two years undergoing tests, and we never found anything. It's better now, appearing only about three times a year, which is a relief... previously, it was almost daily, and despite taking various painkillers, nothing helped. I was screaming and crying, feeling completely helpless. It usually happened most often when I was doing physical labor, lifting heavy objects, or walking a lot, but it would also catch me while I was sleeping and wake me up... there wasn't any logical pattern to it...
2007 —lost 7 pounds in two weeks (for my height, I dropped down to 121 lbs at the time). I attribute that to the stress of my grandmother's illness and passing, among other things... I can't prove it, so I'm just sticking to that theory. I've been struggling with my weight ever since. I managed to get back up to around 132-134 lbs recently (which I'll write more about later)...
May 2011- My headaches started hitting about 3 or 4 times a week... I went through several checkups, and they eventually found a clear spot on my pituitary gland—my endocrinology results were fine—which they want me to monitor, though the specialists don't think it's what's causing the pain. The neurologist I saw was honestly pretty unpleasant—to put it politely—and after a year of putting off more tests, I started taking Tegretol around month 6. Since then, things have stabilized somewhat. The headaches aren't as frequent, and when they do happen, they aren't quite as unbearable as they used to be..
June 2012 - That "butterfly rash" appeared—exactly as I described earlier...
July 2012 - I ended up in the hospital after running a fever for five days straight, coupled with intense light sensitivity and vomiting. My lymph nodes were swollen too—in my neck, under my ear, and under my armpit. The diagnosis was lymphadenitis, which they treated successfully with antibiotics.
From July 2012 until now - those lymph nodes are still there. They're noticeably swollen. The one under my left armpit is still present, and now the one under my ear has flared up again (though the one under my ear subsided for about three weeks). I had an ultrasound where they confirmed the swelling and measured the size. Later, I saw a hematologist who suggested sending me for a biopsy to see what's really going on.
The hematologist actually claimed the swelling under my arm was just connective tissue—after he squeezed it so hard it hurt for the rest of the day—even though the ultrasound clearly showed otherwise. By then, the node under my ear had shrunk enough that he couldn't examine it properly. To make matters worse, some representative from a pharmaceutical company happened to be visiting during the appointment, and I felt like I was practically kicked out of the office within two minutes of this "exam." They basically told me everything was fine and that I should just perform self-exams... I still have this issue today, and I'm at a loss for what to say or do next..
From July until now - since getting sick (maybe even before, I've lost track because everything became so overwhelming), I've lost about 7 or 8 pounds and it just won't come back. I eat "normally"—well, in amounts that might seem excessive—but I tend to eat late, usually after 8 or 9 PM, so I know it isn't a diet issue..
One more thing—over the last few months, I've noticed my hair is thinning quite a bit. Much more than usual. It’s a little scary, though it hasn't reached the point where it's visibly thinning yet..
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I hope I haven't made this too complicated; I tried to keep it brief while including everything I could remember. Who knows, maybe I missed something... I'll try to recall if anything else comes to mind..
What I'm really wondering is, since I feel like I've hit a dead end, if anyone else recognizes these symptoms? I don't really have any other options left but to post here and hope that tomorrow I'll be a bit more "enlightened"..
Thanks for taking the time to read this.
Best, restlessangler
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These blisters popped up after I spent about six hours playing beach volleyball in the sun—it wasn't my first time out, even though I don't play that often, and I'm not usually that sensitive to UV exposure—back in June.
When I ended up in the hospital in July (due to some inflamed lymph nodes), things flared up significantly; it was extremely red and swollen. Once my fever started breaking, it calmed down and returned to its previous state—just some redness, but nothing intense... It seemed to be improving over a couple of weeks, but then suddenly, everything flared up again, and stayed that way until three weeks ago.
To the touch, it felt slightly swollen, and since this had been going on for three months, it was gradually increasing, though not at an extreme speed.
Here is a photo of how it looked when it was relatively okay—you can't see much, but there was still some swelling. I had this on both sides of my face. The left side was milder, while the right side was quite pronounced.

-------------------------------------------------------------------
I finally saw a dermatologist after two months because the symptoms just wouldn't subside.
The test results I received are listed below...
Demodex Foll. came back negative—if I wrote that correctly...
Positive for P. oval (several instances)

----------------------------------------------------------------------
My second dermatology appointment was after I got those last results, and by then, the redness had actually calmed down for about two weeks...
The dermatologist's take was that I have seborrheic dermatitis—a genetic condition (though as far as I know from looking at my family, nobody else has ever dealt with it)—and they prescribed a cream for me to use if it flares up again...
----------------------------------------------------------------------
So, here's the thing...
A few days ago, I was at the beach, went for a swim, and then laid out on a lounge chair and fell asleep. I was out in the sun for maybe half an hour (it was around 4 or 5 PM), and as soon as I woke up, I could feel it coming back... specifically, this sensation on my face that just feels "off."
That area is turning red again, and the blisters have reappeared...
I've actually had a sun allergy since 2002. Specifically, on my hands and the lower part of my legs. Since that first occurrence, the issues have only happened in those areas, and I do spend quite a bit of time in the sun (though obviously, I'm careful about those specific spots).
I wonder if I've developed a sun allergy on my face as well. How would I even check for that? My dermatologist didn't mention that as an option...
----------------------------------------------------------------------
Health issues since 2003:
2003 to present —even though it hasn't been as bad the last four years (since I have a "lighter" physical job now), I've dealt with pain in my right abdomen. Terrible pain, and no one could figure out the cause. I spent two years undergoing tests, and we never found anything. It's better now, appearing only about three times a year, which is a relief... previously, it was almost daily, and despite taking various painkillers, nothing helped. I was screaming and crying, feeling completely helpless. It usually happened most often when I was doing physical labor, lifting heavy objects, or walking a lot, but it would also catch me while I was sleeping and wake me up... there wasn't any logical pattern to it...
2007 —lost 7 pounds in two weeks (for my height, I dropped down to 121 lbs at the time). I attribute that to the stress of my grandmother's illness and passing, among other things... I can't prove it, so I'm just sticking to that theory. I've been struggling with my weight ever since. I managed to get back up to around 132-134 lbs recently (which I'll write more about later)...
May 2011- My headaches started hitting about 3 or 4 times a week... I went through several checkups, and they eventually found a clear spot on my pituitary gland—my endocrinology results were fine—which they want me to monitor, though the specialists don't think it's what's causing the pain. The neurologist I saw was honestly pretty unpleasant—to put it politely—and after a year of putting off more tests, I started taking Tegretol around month 6. Since then, things have stabilized somewhat. The headaches aren't as frequent, and when they do happen, they aren't quite as unbearable as they used to be..
June 2012 - That "butterfly rash" appeared—exactly as I described earlier...
July 2012 - I ended up in the hospital after running a fever for five days straight, coupled with intense light sensitivity and vomiting. My lymph nodes were swollen too—in my neck, under my ear, and under my armpit. The diagnosis was lymphadenitis, which they treated successfully with antibiotics.
From July 2012 until now - those lymph nodes are still there. They're noticeably swollen. The one under my left armpit is still present, and now the one under my ear has flared up again (though the one under my ear subsided for about three weeks). I had an ultrasound where they confirmed the swelling and measured the size. Later, I saw a hematologist who suggested sending me for a biopsy to see what's really going on.
The hematologist actually claimed the swelling under my arm was just connective tissue—after he squeezed it so hard it hurt for the rest of the day—even though the ultrasound clearly showed otherwise. By then, the node under my ear had shrunk enough that he couldn't examine it properly. To make matters worse, some representative from a pharmaceutical company happened to be visiting during the appointment, and I felt like I was practically kicked out of the office within two minutes of this "exam." They basically told me everything was fine and that I should just perform self-exams... I still have this issue today, and I'm at a loss for what to say or do next..
From July until now - since getting sick (maybe even before, I've lost track because everything became so overwhelming), I've lost about 7 or 8 pounds and it just won't come back. I eat "normally"—well, in amounts that might seem excessive—but I tend to eat late, usually after 8 or 9 PM, so I know it isn't a diet issue..
One more thing—over the last few months, I've noticed my hair is thinning quite a bit. Much more than usual. It’s a little scary, though it hasn't reached the point where it's visibly thinning yet..
-----------------------------------------------------------------------
I hope I haven't made this too complicated; I tried to keep it brief while including everything I could remember. Who knows, maybe I missed something... I'll try to recall if anything else comes to mind..
What I'm really wondering is, since I feel like I've hit a dead end, if anyone else recognizes these symptoms? I don't really have any other options left but to post here and hope that tomorrow I'll be a bit more "enlightened"..
Thanks for taking the time to read this.
Best, restlessangler