.Dear Doctor,
I was dx with Herpes Simplex 1 genitally and orally, about a year ago, by both blood test and culture. I continue to have monthly recurrences, on both locations, although at different times. I understand this is very rare. Any reasons why I might be such a statistical outlier?
I have my "genital" outbreaks on my upper thigh, not my vagina. I also understand this a rare breakout location for HSV1. Any again reasons why I might be so different in this regard?
How contagious am I in terms of a potential sex partner?
What are your thoughts on suppression therapy for this condition?
Looking forward to your thoughts on this. .
.Welcome to the forum. I'll try to help.
As you seem to know, this is an extremely uncommon situation; I have never heard of HSV-1 causing such frequent recurrent episodes. So the first and most important thing is to be sure that your recurrent symptoms are in fact herpes outbreaks. I am quite skeptical. Let's start with a detailed description of the symptoms: exact location(s), how the symptoms start, how they change over the next few days, how long each outbreak lasts, and so on. If any outbreaks were examined professionally, what the provider said about them and the results of any additional HSV tests done. Also what treatments you have tried and how effective treatment has been.
In addition, say a bit more about the initial infection a year ago. Was the positive culture from the genital ares, mouth, or both? How long after symptoms started was the blood test done? And the detailed blood test result -- type of test, numerical value, etc.
If indeed the problem is recurrent herpes, it should be pretty easily controlled by treatment with one of the antii-herpes drugs, i.e. acyclovir, valacyclovir, or famciclovir. What has your provider said about all this? Other than that, I'll need all this additional information before I can answer your specific questions.
Best wishes-- HHH, MD .
.Thank you. I will try to clarify:
I get approx 4 or 5 genital OBs a year and 3 or 4 oral OBs a year. They do not occur simulataneously, although they did when I was first dx--both places by culture. I had a blood test a few months later, IgG, numeric values in the mid 4 range. I can't remember the specifics.
The OBs last around 1 - 2 weeks, the legs ones longer.
The doctor suggested on episodic therapy with Valtrex, and told me that HSV1 should never be treated suppressively, only HSV2.
The episodic therapy helps but not 100%. I don't use it for all OBs, just the oral ones.
Thanks.
.Thanks for the additional information. Although you don't describe the outbreaks in detail, if they are typical for herpetic episodes -- a cluster of one or more blister-like lesions that then become pimple-like or ulcers and heal with scabs -- then herpes indeed is likely. If there is any doubt, however, it would be good to see your doc within a day or two of an outbreak (of either site, perhaps both) for testing for HSV-1. But if the appearance is typical and your doc is convinced of the diagnosis, it probably isn't necessary.
There is no reason not to take suppressive therapy for HSV-1. There are more data available for genital HSV-2, simply because more research has been done, but that doesn't mean suppression isn't useful and effective against HSV-1. (The official labeling may say treatment is only "approved" for genital HSV-2, but that is not a regulatory limit of any kind.)
HSV-1 is inherently less susceptible to the antiherpetic drugs than HSV-2, so a larger dose may be necessary. The standard dose of valacyclovir (Valtrex) for suppression of HSV-2 is 500 mg once daily, increasing to either 500 mg twice daily or 1.0 g (1,000 mg) once daily in those with especially frequent outbreaks. For HSV-1, I would start at 500 mg twice daily; and if only partially effective, increase to 1.0 g twice daily. The drug is very well tolerated, even at high doses, with few if any side effects. The drug is expensive, so the main "side effect" will be financial, depending on your medical insurance coverage for drugs. .
I want to enroll in a research study (unrelated to HSV) and you need not have any chronic illnesses to qualify. Does my situation count as a chronic illness? .
.Normally people with genital HSV-1 are not highly infectious through genital intercourse. But your situation isn't normal, and there may be substantial risk of transmission, if a future sex partner is susceptible. Your partner(s) can have HSV-1 blood tests; if positive, he is already infected and won't catch it again. (People are generally immune to new infections with the HSV type they already have, anywhere on the body.) If negative, there will be some risk, which will be reduced but perhaps not eliminated by taking valacyclovir. But it isn't possible to say exactly the chance of transmission either with or without treatment. .
For most clinical research, "chronic illness" is meant to exclude people with things like abnormal kidney function, liver disease, cancer on chemotherapy, and the like. But the definition varies from study to study. You should tell the investigators about your recurrent herpes and your treatment (or plans for treatment) of it -- and let them decide whether you remain suitable as a study subject. .
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