November 25, 2020 at 3:20 pm #71891
I hope you’re staying relaxed and safe, Terri!
I’m a 24 y.o. F who’s had genital HSV-1 for about 1.5 yrs now (confirmed via sore swab).
After my 1st OB, I began taking 500mg of Valtrex daily and only had OBs occasionally. However, starting this summer, my herpes has gone wild! The last full outbreak I had (~July) made me realize 500mg was losing efficacy. I could feel my prodromal symptoms (mostly tingling, light itching—both in genital region) returning as soon as I went from 1g to 500 mg.
My gyno put me on 1g daily for 3 mos to get things under control.
At first, 1g was great. Then, one day I felt an OB coming on, so I began taking 2g as advised. But as soon as I went back down to 1g after 5 days of 2g, the prodromal symptoms returned.
Today, my prodromal symptoms appear daily, even as I take 1g of Valtrex daily. Perhaps the oddest thing is that I feel tingling all over my body, rather than just in the expected regions.
I’m fine on 2g, but as soon as I’m back to 1g, symptoms return. I can’t tell if this is herpes or paranoia/placebo (I have mild OCD, so admittedly, this situation is something I fixate on—but I do think it’s legit). Rather annoyingly, it seems as if this all-over tingling is unheard of online! Until this summer, my symptoms were run of the mill.
Again, I never have a real OB. The worst I get is itching, i.e. in the areas my first OB sores appeared.
Now I’ve been prescribed acyclovir, which feels less effective than V, but my doc thinks my body has a resistance to Valtrex (…which I hear is very rare). On what sounded like a whim, she also recommended I just go off antivirals completely, just to see if the outbreak would fully happen vs. continually suppressing it, but idk how scientific of a rec that was.
I’m not immunocompromised; normal blood work & pap; on lysine.
TBH, I wouldn’t be as concerned if I weren’t in a happy relationship, but we haven’t been able to get down for months! Help!
Girl Seeking General Advice
November 25, 2020 at 5:55 pm #71893
Realizing you may have skipped over my question as it was so general. For clarification:
What do you advise I do in this situation where my Valtrex isn’t working as well as before and I have constant prodromal symptoms?
Is this body tingling sensation entirely unheard of, or do you think it’s paranoia? It comes and goes with stress throughout the day.
And do you think my doctor’s random advice on stopping antivirals all together to encourage a real OB is legitimate?
Like I said, I am looking for general advice since things seem to be so up in the air and my doctor seems stumped herself as in healthy and my herpes seems so unusually chronic.
November 25, 2020 at 7:54 pm #71894
So, I just realized I can only ask one question: so this will be my sole question. My sincerest apologies for not reading the forum instructions more closely. I wasn’t trying to get more for my money, I swear! 🙂
Is this full-body tingling unheard of, or have you had patients who experience this?
November 30, 2020 at 3:14 pm #71923Terri WarrenKeymaster
I suspect that you are overinterpreting your symptoms as genital HSV 1, when they likely are not. HSV 1 recurs and sheds very infrequently in the genital area, certainly not at the rate that you feel you are experiencing prodromal symptoms. I think the best way to sort this out is to consider coming off the antiviral medicine and when you get very distinct symptoms that you think are prodromal symptoms, have them swab tested using PCR, the most sensitive test for swabbing.
Is your HSV 1 from your current partner? Is your current partner HSV 1 positive?
Full body tingling is not related to herpes, no.
December 1, 2020 at 4:31 pm #71944
Hi Terri, thanks for the insightful response. I will stop taking antivirals and see what happens.
HSV-1 is from my past partner, who had oral herpes. He got cold sores and didn’t realize that even when they weren’t (visibly) present, he could be shedding the virus.
He said ended up testing “positive” for HSV-1 via blood test shortly after I told him I had HSV-1. I was diagnosed via a swab taken from one of the sores I had in my genital region. (I assumed it was him as I knew he had issues with cold sores before; however, rather naively, neither of us realized cold sores equated to herpes)
My current partner and I don’t know his HSV status (he is either negative or asymptomatic; he’s never been tested for HSV in particular).
After I go off the antivirals, will my doctor be able to do a PCR swab even if I’m not showing any sores?
December 2, 2020 at 4:42 pm #71961Terri WarrenKeymaster
It is certainly possible to swab an asymptomatic area but the return on the swabs is better when there are sores present. I don’t think having tingling is asymptomatic, though, you are symptomatic. The question is will your provider agree to do swabbing if no lesions are present. I would if I were your provider, for sure
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