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HSV 1 Mystery
Hi everyone! I'm sorry this is complicated, but this is the 10th week of this nightmare, and I've been trying to find answers. Thank you in advance for reading through this.
I'm 28 and contracted oral herpes (HSV-1) in mid-August for the first time. I had a severe primary outbreak. 103 fevers, swollen lymph nodes, muscle aches, and sores on my lips, mouth, and throat, along with swollen gums. The lesions presented classically.
I began Valtrex 2 days in at 3G daily for 10 days. So far, so good. I never touched the sores with my hand, and made sure there was no cross-contamination.
On the 10th day, my face felt itchy and burned in the "beard" area (I'm female). Then it erupted in tiny, fluid-filled sacs. They spread into my regular acne and formed large lesions. I have had acne in the past, and these felt different. They felt like they were "on top of the skin" instead of erupting from deeper like pimples. The lesions would drain and refill, and grew to the size of pencil erasers or bigger, and contained mainly fluid and blood (they bleed a lot). The lesions leave red, pitted scars when healed. My entire face burned and itched constantly, and my eyes also burned. I was diagnosed with blepharitis of unknown cause.
Some of the lesions were tested, and a few came back for staph, but most came back with nothing. Doctors said wait and see, and I stayed on the 1 G Valtrex maintenance dose for weeks.
Meanwhile, my eyebrows and hair began to have flakes in it, and started to fall out. It is still falling out now.
I finally stopped Valtrex, and three days later, my face blew up again with these lesions. Stopping the Valtrex caused another staph infection, this time a red inflamed patch that looked like chemical burns, on my face. This then turned yellow and began to flake and ooze slightly.
No dermatologist or infectious disease doctor knows what this is. They said I seem to have symptoms of seborrheic dermatitis, but the onset was overnight. They are at a loss for what these lesions are, but insist it is not herpes. I am not convinced, as they began when the herpes did. Dermatologists have scatter-shot cultured one or two of these lesions for herpes (about 3-4 days or greater into the sore development), but they were negative.
My herpes symptoms have also not resolved. My lips continue to flake, are deep red (like I have Queen Amidala lipstick on), and throb. I continue to have pain, tingling, and burning in my mouth and on the tip of my tongue as well. Small, isolated lesions that look like pimples pop up on my vermillion border and chin, but they are actually fluid-filled and do not pop like zits. They also do not dry up and crust over like the initial sores on my lips either, and do not look like classic HSV sores either.
I have not had one day free of some kind of sore since the onset in August.
I have been on both Valtrex and acyclovir, and am unsure what to do next. I tested positive for HSV, so it is confirmed. I have not had a "classic" presentation of a herpes sore on my lip since 2 weeks from the beginning of the outbreak.
It has now been 10 weeks. I cannot sleep at night because the pain and itching is so strong. My face is completely scarred. I cannot even put water on it, or flakes fall off and the skin layer rips open and becomes inflamed. (It feels like I am missing the top layer of skin).
I'm not sure what to do, but I'm wondering if this could be herpes eczema? I'm frightened that it may have spread onto my face despite me never touching the lip sores.
I have no known immune issues (also tested for) and am HIV negative. I really hope someone can help guide me or offer input. Does herpes manifest this way? If so, I'm not sure why it has not gone dormant and continues to activate despite antivirals. Any help would be appreciated, as I am now physically ill from 10 weeks of sleep deprivation.
I'm 28 and contracted oral herpes (HSV-1) in mid-August for the first time. I had a severe primary outbreak. 103 fevers, swollen lymph nodes, muscle aches, and sores on my lips, mouth, and throat, along with swollen gums. The lesions presented classically.
I began Valtrex 2 days in at 3G daily for 10 days. So far, so good. I never touched the sores with my hand, and made sure there was no cross-contamination.
On the 10th day, my face felt itchy and burned in the "beard" area (I'm female). Then it erupted in tiny, fluid-filled sacs. They spread into my regular acne and formed large lesions. I have had acne in the past, and these felt different. They felt like they were "on top of the skin" instead of erupting from deeper like pimples. The lesions would drain and refill, and grew to the size of pencil erasers or bigger, and contained mainly fluid and blood (they bleed a lot). The lesions leave red, pitted scars when healed. My entire face burned and itched constantly, and my eyes also burned. I was diagnosed with blepharitis of unknown cause.
Some of the lesions were tested, and a few came back for staph, but most came back with nothing. Doctors said wait and see, and I stayed on the 1 G Valtrex maintenance dose for weeks.
Meanwhile, my eyebrows and hair began to have flakes in it, and started to fall out. It is still falling out now.
I finally stopped Valtrex, and three days later, my face blew up again with these lesions. Stopping the Valtrex caused another staph infection, this time a red inflamed patch that looked like chemical burns, on my face. This then turned yellow and began to flake and ooze slightly.
No dermatologist or infectious disease doctor knows what this is. They said I seem to have symptoms of seborrheic dermatitis, but the onset was overnight. They are at a loss for what these lesions are, but insist it is not herpes. I am not convinced, as they began when the herpes did. Dermatologists have scatter-shot cultured one or two of these lesions for herpes (about 3-4 days or greater into the sore development), but they were negative.
My herpes symptoms have also not resolved. My lips continue to flake, are deep red (like I have Queen Amidala lipstick on), and throb. I continue to have pain, tingling, and burning in my mouth and on the tip of my tongue as well. Small, isolated lesions that look like pimples pop up on my vermillion border and chin, but they are actually fluid-filled and do not pop like zits. They also do not dry up and crust over like the initial sores on my lips either, and do not look like classic HSV sores either.
I have not had one day free of some kind of sore since the onset in August.
I have been on both Valtrex and acyclovir, and am unsure what to do next. I tested positive for HSV, so it is confirmed. I have not had a "classic" presentation of a herpes sore on my lip since 2 weeks from the beginning of the outbreak.
It has now been 10 weeks. I cannot sleep at night because the pain and itching is so strong. My face is completely scarred. I cannot even put water on it, or flakes fall off and the skin layer rips open and becomes inflamed. (It feels like I am missing the top layer of skin).
I'm not sure what to do, but I'm wondering if this could be herpes eczema? I'm frightened that it may have spread onto my face despite me never touching the lip sores.
I have no known immune issues (also tested for) and am HIV negative. I really hope someone can help guide me or offer input. Does herpes manifest this way? If so, I'm not sure why it has not gone dormant and continues to activate despite antivirals. Any help would be appreciated, as I am now physically ill from 10 weeks of sleep deprivation.
Fleetwood- You're absolutely right about doctors pursuing immune deficiency issues. They tested me for HIV (thankfully negative), as well as a quantitative immune panel (all the hepatitises, and the IgA, IgG, and IgM levels, I believe.). All of them came back in normal range, mid-to high, actually. There was even talk as to whether this could be a mild version of Stevens-Johnsons? from herpes, not medications, but then there is the question as to why the antivirals aren't helping suppression.
I am wondering about autoimmune testing now. I have been having strange health problems on an off ever since I contracted a case of Lyme disease in 2006. It seems my body is prone to neurological complications and has difficulty clearing certain infections. Doctors are not sure if this is immune-based, or if I do not metabolize medications properly.
Thanks again. I'm trying to hang in there and wait, but the pain is so disruptive.
I am wondering about autoimmune testing now. I have been having strange health problems on an off ever since I contracted a case of Lyme disease in 2006. It seems my body is prone to neurological complications and has difficulty clearing certain infections. Doctors are not sure if this is immune-based, or if I do not metabolize medications properly.
Thanks again. I'm trying to hang in there and wait, but the pain is so disruptive.
This does all sound like complications with HSV1 and your body not coping with it terribly well.
This may mean a form of immune deficiency, no sure how conversations with your doctors proceed along those lines?
This may mean a form of immune deficiency, no sure how conversations with your doctors proceed along those lines?
Thanks for the timely reply! I live on the East Coast near New York. I actually had not been travelling at all, as two months before I got a moderate concussion.
In August, I had contact with a friend who thought he had a sun blister. 4 days later, I had a tingling on my lower lip, and it erupted into the primary outbreak. We both got tested via swab and bloodwork 48 hours after my sores erupted. (I had to wait 4 weeks for the blood test, but his came immediately.). We both were positive on each for HSV-1. I had never had a cold sore or any symptoms before.
My titer 6 weeks later was still 2.27 IgG, if that means anything. Subsequent swabbing of sores on my face and lips have never been positive again, but I have been constantly on antivirals.
I am suspicious because these sores/lesions on my face keep coming up in the same spots. The area will tingle and burn, turn red, they initially look like swollen blind pimples, itch, but then become filled with blood and fluid.
The only clues I have are that there are cycles in the day where there will be inflammation all over my face (usually around 6pm), my lymph nodes may feel swollen, and then it begins again all night. It is also terrible in the early morning with the itching, from 5am-8am.
I did see an infectious disease doctor, who was not sure if it was a reaction to the medication (now ruled out), herpes, erythema multiforme from the herpes, or an autoimmune condition brought on by the herpes. I keep getting shuffled around to dermatologists who are puzzled as well.
I am now going off all antivirals and waiting to see if things worsen, then I have to go in and have a sore biopsied. I had acne as a teenager, and this is definitely not the same, and is incredibly painful. OTC painkiller and antihistamines do nothing, and it has not responded to oral antibiotics, antivirals, or topical antibiotics.
They have also checked for demodex mites and fungus, but did not see anything.
In August, I had contact with a friend who thought he had a sun blister. 4 days later, I had a tingling on my lower lip, and it erupted into the primary outbreak. We both got tested via swab and bloodwork 48 hours after my sores erupted. (I had to wait 4 weeks for the blood test, but his came immediately.). We both were positive on each for HSV-1. I had never had a cold sore or any symptoms before.
My titer 6 weeks later was still 2.27 IgG, if that means anything. Subsequent swabbing of sores on my face and lips have never been positive again, but I have been constantly on antivirals.
I am suspicious because these sores/lesions on my face keep coming up in the same spots. The area will tingle and burn, turn red, they initially look like swollen blind pimples, itch, but then become filled with blood and fluid.
The only clues I have are that there are cycles in the day where there will be inflammation all over my face (usually around 6pm), my lymph nodes may feel swollen, and then it begins again all night. It is also terrible in the early morning with the itching, from 5am-8am.
I did see an infectious disease doctor, who was not sure if it was a reaction to the medication (now ruled out), herpes, erythema multiforme from the herpes, or an autoimmune condition brought on by the herpes. I keep getting shuffled around to dermatologists who are puzzled as well.
I am now going off all antivirals and waiting to see if things worsen, then I have to go in and have a sore biopsied. I had acne as a teenager, and this is definitely not the same, and is incredibly painful. OTC painkiller and antihistamines do nothing, and it has not responded to oral antibiotics, antivirals, or topical antibiotics.
They have also checked for demodex mites and fungus, but did not see anything.
Relative to the symptoms appearing, when did and how did you test positive for HSV1?
Where are you and have you been traveling recently?
I really do not have much to add to your situation. An infectious disease specialist would seem to be a must. If it is herpes, I doubt it would be the only ailment present.
Where are you and have you been traveling recently?
I really do not have much to add to your situation. An infectious disease specialist would seem to be a must. If it is herpes, I doubt it would be the only ailment present.
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Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
