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Herpes vs Stevens-Johnson, maybe something else?
I have certain symptoms, my dermatologist and PCP can't give a definite diagnosis. Symptoms are:
- ulcers on foreskin and glans. They ooze yellow fluid and heal within 2 weeks. They are preceded by one big blister rather than a number of small ones,no swelling before the blister; different from book descriptions of herpes and from my own experience with cold sores (had since 1980).
- blisters later ulcers on my palate
- eyes - conjunctivitis-like symptoms, red, itchy, yellow discharge
- ulcer in the anal area, some bleeding
- ulcers on lips. Different from cold sore, no swelling, no blisters
- red spots - last time, three on my back, one on my chest, one on a toe. They do not itch, later become dark.
1) A 44 year old heterosexual, sexually inactive since 1993
2) Outbreaks in June 2007, September 2007, June 2008
3) On Acyclovir since September 2007. Did it help? Probably not, given the recent outbreak
4) Culture taken from a penile ulcer in June 2007 indicated nothing
5) Antibodies test indicates HSV-1 virus, i.e. cold sore, no surprise, had it since 1980
6) medications I take are Levoxyl (for hypothyroidism) and Acyclovir
7) I was tested for all possible STDs and I don't have any (unless you count cold sores, which sometimes are an STD)
8) I have had cold sores since 1980. Recent outbreaks have been happening every 3-4 years or so.
My dermatologist thinks the ulcers are due to HSV-1. She thinks I may have transferred it with my finger to my anal and penile area. I disagree because of 4) (culture produced nothing) and because my lips are different than under cold sores
My PCP thinks this may be Stevens-Johnson syndrome. I know SJS can be due to an allergy or an HSV outbreak (any other reasons?). My PCP has not spoken definitively about the cause. He wants me to continue taking Acyclovir.
Am I correct to disagree with my dermatologist?
I still think my penile area is not infected with HSV. Is the negative culture a sufficient test?
Should I go off Acyclovir?
- ulcers on foreskin and glans. They ooze yellow fluid and heal within 2 weeks. They are preceded by one big blister rather than a number of small ones,no swelling before the blister; different from book descriptions of herpes and from my own experience with cold sores (had since 1980).
- blisters later ulcers on my palate
- eyes - conjunctivitis-like symptoms, red, itchy, yellow discharge
- ulcer in the anal area, some bleeding
- ulcers on lips. Different from cold sore, no swelling, no blisters
- red spots - last time, three on my back, one on my chest, one on a toe. They do not itch, later become dark.
1) A 44 year old heterosexual, sexually inactive since 1993
2) Outbreaks in June 2007, September 2007, June 2008
3) On Acyclovir since September 2007. Did it help? Probably not, given the recent outbreak
4) Culture taken from a penile ulcer in June 2007 indicated nothing
5) Antibodies test indicates HSV-1 virus, i.e. cold sore, no surprise, had it since 1980
6) medications I take are Levoxyl (for hypothyroidism) and Acyclovir
7) I was tested for all possible STDs and I don't have any (unless you count cold sores, which sometimes are an STD)
8) I have had cold sores since 1980. Recent outbreaks have been happening every 3-4 years or so.
My dermatologist thinks the ulcers are due to HSV-1. She thinks I may have transferred it with my finger to my anal and penile area. I disagree because of 4) (culture produced nothing) and because my lips are different than under cold sores
My PCP thinks this may be Stevens-Johnson syndrome. I know SJS can be due to an allergy or an HSV outbreak (any other reasons?). My PCP has not spoken definitively about the cause. He wants me to continue taking Acyclovir.
Am I correct to disagree with my dermatologist?
I still think my penile area is not infected with HSV. Is the negative culture a sufficient test?
Should I go off Acyclovir?
MEDICAL PROFESSIONAL
There are several variables to consider in trying to prove or disprove that your penile lesions are HSV. These include timing, the test performed and other potential modifiers of culture positivity. If you choose to pursue additional testing should the lesions recur (and I think this is good idea) you should consider them. Here are my comments:
1. Timing. The sooner after a lesion occurs the more likely you are to get a positive test, Thus the sooner you can be tested, the less likely that the test would be false negative if indeed these lesions are herpes (I still doubt this).
2. The test. While cultures are still most widely used, PCR tests are widely available and considerably more sensitive than culture. They are also more expensive expensive if you are paying for them yourself. Again, as above, a PCR test would make it less likely that your result would be false negative.
3. Other factors. If you are taking antiviral therapy such as acyclovir, there is a chance that this could make your test false negative although, it there is sufficient virus present to cause a lesion, the test should be positive. If you are still taking acyclovir, again, a PCR test would be expected to help overcome the potential loss of sensitivity. Other creams and lotions (antiviral or not) could also interfere with getting positive test-- best to have the test performed without any lotions, creams or topical medications.
EWH
1. Timing. The sooner after a lesion occurs the more likely you are to get a positive test, Thus the sooner you can be tested, the less likely that the test would be false negative if indeed these lesions are herpes (I still doubt this).
2. The test. While cultures are still most widely used, PCR tests are widely available and considerably more sensitive than culture. They are also more expensive expensive if you are paying for them yourself. Again, as above, a PCR test would make it less likely that your result would be false negative.
3. Other factors. If you are taking antiviral therapy such as acyclovir, there is a chance that this could make your test false negative although, it there is sufficient virus present to cause a lesion, the test should be positive. If you are still taking acyclovir, again, a PCR test would be expected to help overcome the potential loss of sensitivity. Other creams and lotions (antiviral or not) could also interfere with getting positive test-- best to have the test performed without any lotions, creams or topical medications.
EWH
MEDICAL PROFESSIONAL
Tough situation. Let me share a few thoughts with you, first pointing out that you are under the care of a specialist who has had the opportunity to examine you- something that is likely of greater value than my advice over the net without the benefit of being able to examine you.
What you describe is suggestive of erythema multiforme, a group of skin eruptions which include Stevens-Johnson. These syndromes, as you know, can be caused by a variety of things, including herpes. If due to herpes, the eruptions need not be culture positive but do, in general respond to chronic suppressive therapy with acyclovir.
I doubt that your penile, anal or palate ulcers are due to self-inoculation from your cold sores. this is very rare and if it happened would not have occurred at two different locations.
In summary, could this be erythema multiforme or Stevens-Johnson- yes. does herpes explain all of this- less sure about that. Your situation is a difficult one- I would continue to work with your dermatologist. If it has not been done, a small biopsy of your lesions when and if the recur may be helpful. Good luck. EWH
What you describe is suggestive of erythema multiforme, a group of skin eruptions which include Stevens-Johnson. These syndromes, as you know, can be caused by a variety of things, including herpes. If due to herpes, the eruptions need not be culture positive but do, in general respond to chronic suppressive therapy with acyclovir.
I doubt that your penile, anal or palate ulcers are due to self-inoculation from your cold sores. this is very rare and if it happened would not have occurred at two different locations.
In summary, could this be erythema multiforme or Stevens-Johnson- yes. does herpes explain all of this- less sure about that. Your situation is a difficult one- I would continue to work with your dermatologist. If it has not been done, a small biopsy of your lesions when and if the recur may be helpful. Good luck. EWH
Thanks, especially for info about PCR
Thanks, doctor. I'm thinking of getting the culture from penile ulcers again, so let me ask this: In a person with (hypothetically) HSV-1 in the penile area, would it be possible for the culture to be negative all of the time? I would think that if I really had HSV-1 in the penile area, then the culture would be positive at least some of the time? Am I right or wrong?
You are reading content posted in the STDs Forum
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.
