.I am 42 years old and was diagnosed with genital HSV 1 about 10 years ago by an infectious disease specialist using the standard testing methodology. In the absence of suppressive treatment with valacyclovir, I continue to have genital outbreaks anywhere from every 6-12 weeks. I recently stopped all treatment and validated that I still get moderately severe outbreaks every 6 - 12 weeks. I have not other health issues and exercise regularly. I also avoid all of the "suspect" foods (i.e.: nuts, chocolate, etc.)
I understand that recurrent genital outbreaks of HSV 1 are extremely rare, particularly this long after diagnosis. Is there anything I can be doing to to help resolve this problem other than suppressive valacyclovir therapy? Are there any other medications / treatments that could boost my immune system capability to suppress the virus over the long term? Are there any clinical trials that I can volunteer for?
Thanks
Frequent recurrences with genital HSV-1 are infrequent, but not quite as rare as your question implies. In the main research study on recurrence frequency, in the first 2-3 years after initial genital infection with HSV-1, 40% of patients had no recurrent episodes and about 50% had 1-2 outbreaks then none. But the remaining 5-10% had outbreaks with frequency similar to HSV-2 infections. It isn't known how many continue with frequent outbreaks beyond 2-3 years isn't known, but my guess is that 1-2% have the sort of recurrence frequency that you describe.
I suggest you see a provider to confirm the diagnosis of HSV-1, especially if that has not been done since the initial diagnosis. And what do you mean by "standard testing methodology"? If a culture or PCR test showed HSV-1 and not HSV-2, it's probably definitive -- but still worthy of confirmation. If only by blood test, that isn't adequate to be certain. For now, stay off the valacyclovir and see a provider within 1-2 days of the next outbreak, for another culture or PCR test. It would not surprise me if additional testing shows you actually have HSV-2.
Assuming the diagnosis of recurrent genital herpes is correct, whether due to HSV-1 or -2, there are no known treatments, diets, exercise, avoiding stress, or other methods that are known to affect the frequency or severity of symptomatic outbreaks. If you are convinced that your "suspect foods" really make a difference, by all means avoid them. But research shows that most such beliefs don't hold up when examined objectively.
However, here is one aspect that might be worth considering: If the outbreaks are not too severe and/or you are not sufficiently sexually active to put new partners at risk, I would advise staying off suppressive therapy for a year or two and treat each outbreak with brief episodic therapy instead. The natural course of genital herpes is a gradual reduction in outbreak frequency, but being on suppressive therapy might prolong the time until that happens. This isn't proved but some experts consider it a reasonable possibility. If so, you may find that your outbreaks decline in frequency when not taking continuous valacyclovir.
Finally, it would be good for you to be under the care of a true herpes expert; some but not all infectious diseases specialists have that expertise. Although MedHelp does not make referrals to specific providers, if you'll say where you are, I might be able to recommend a medical institution in a nearby metropolitan area.
Thanks for your prompt reply. I will try your suggestion to stop taking valacyclovir as suppressive therapy and let you know how it works out.
It was, in fact, a PCR test that confirmed HSV1 infection
Still you should confirm the virus type with more recent testing. The technology and reliability of PCR has moved a long way in the past decade, and I would not guarantee that it's HSV-1 based on that single test. If you don't want to wait for the next outbreak, have a blood test to assure it is positive only for HSV-1 and not HSV-2. .
This seems to be an intresting statistics on recurrences with genital HSV-1, could you also cite the study so that I can have a read. Thanks .
.The frequency of HSV-1 versus HSV-2 genital recurrences has been discussed many times on this forum; use the search link to find lots of threads.
The only study that has carefully addressed this issue, to my knowledge, is Benedetti J et al, Ann Intern Med 1994; here is a link to the abstract:
http://www.ncbi.nlm.nih.gov/pubmed/7978697 In one way, the data are expressed in a non-intuitive fashion, as outbreaks per month. To me it is easier to convert to outbreaks per year. For example, 0.36 episodes per month is 4.3 per year (multiply by 12). .
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