September 14, 2015 at 10:23 pm #9396
I had my first outbreak (likely primary herpes outbreak) 5/31/15. Classic genital OB at time of extreme work related stress, had one area on my lower gum that looked like gingivitis under single tooth, associated with possible tender node. Took Valtrex 1 gm BID X 10 days, starting 6/1; everything healed up. developed second genital OB ~ 6/22, (with PCR swab confirmed HSV2), on Valtrex 500 BID x ~ 10 days, then 1 gm QD x 10 days, since then basically on 500 bid suppression, although switched to 1 gm qd ~ 1.5 weeks ago. Occasional labial pain, but no lesions since June. Overall, feeling better about GYN symptoms/management. However, have had bizarre oral symptoms on and off. While on second course of Valtrex 1 gm BID, developed tender lips with no lesions. Resolved on own. Have had persistent tongue tingling, but again no lesions. Approximately 3.5 weeks ago, shortly after starting on antidepressant Celexa (citalopram) developed tingling/burning lips, burning tongue, mouth, sporadic pain and burning over lower chin and extending up over cheeks, also some intermittent itching around corners of mouth and nose. Usually bilateral, migratory, and worse as day goes on. No visible lesions. My primary care MD thinks it is all anxiety, which I acknowledge could be the case. Also possible component menopausal symptoms. Or citalopram side effect?
My question is have you ever seen something like this with HSV2? It is literally driving me crazy, and while I thought I was starting to really be able to cope with the genital HSV, this has seemingly come out of nowhere, doesn’t match with the natural history of HSV2, or with the improvement of my other symptoms.
Any thoughts/input would be greatly appreciated. I will note that I have a scheduled phone consultation with you coming up- but thought I would post anyway, as this is not something I have ever encountered before and am really seeking help. I am otherwise an extremely healthy, previously sane person.
September 15, 2015 at 4:59 pm #9412Terri WarrenKeymaster
I love the previously sane part. To me, this sounds far more like a drug reaction than anything else. Was the oral lesion swab tested to know if it was herpes or not? The presentation sounds more like a canker sore. And it would be unusual though not impossible for your first infection to show up in your mouth and then so much later, show up genitally. Or are you saying the genital lesion was a recurrence? Very odd. Have you had an IgG test to know if you were infected previously?
October 5, 2015 at 9:16 pm #9896
Sorry for the long delay in follow-up – I have been trying to manage this on my own with my primary care MD. To clarify, I had my first known outbreak starting on May 31 with genital lesions (no prior known oral or genital outbreaks). A day or two later concurrent with ongoing initial genital lesions I had a single area of inflammation around one tooth (no true ulcers) that was associated with a tender area under my chin which may have been a node. I thought the oral sore was part of a general viral illness/poor overall condition since this all occurred at a time of extreme personal/work-related stress. Everything healed up with 10 days of valtrex 1 GM BID, but then off any anti-viral had a sacral/genital recurrence (PCR confirmed HSV2) about 10 days later which was treated with Valtrex 500 BID for about 10 days, followed by a second course of Valtrex 1 gm BID x 10 days (recommended by you during a phone consultation). Since then, have been on valtrex suppression, first at 500 BID, then 1 gm qd. Tried 500 qd for about a week but had what looked like small outbreaks on my thighs/hips – all went away when I went back to 500 BID. Had persistent vulvar burning, but since I switched to 1 gm QD dosing that has gotten much better, although also started on estrogen replacement shortly after which has also helped.
Oral symptoms have been on and off as described in my prior question- had strange sensation on tongue back in May, burning, sore lips with no physical findings in July while on 1 gm BID of Valtrex (so hard to believe it was HSV when all genital lesions had healed??) which got better shortly after valtrex decreased to 500 BID, and now 6 weeks of migratory tongue, lip, lower chin burning/tingling,itching with absolutely no physical findings (all while on total daily dose of Valtrex of 1 gm daily) which wax and wane in intensity.
Since my last post, I saw my primary care MD. We stopped citalopram, and started estrogen replacement (only lab finding was low estrogen consistent with menopause) Initially, my oral symptoms improved significantly, but now they are back. Dental exam one week ago completely normal. Other labs (B12, thyroid, WBC with diff, LFTs, ANA, ESR), all completely normal.
I know that my symptoms don’t seem anything like HSV based on any reading i’ve done or anything my MD has seen, but given their persistence, I keep obsessing that I have some strange HSV oral infection which is just barely being suppressed by use of Valtrex. I find this hard to reconcile with the improvement in my genital lesions, but can’t get this out of my head. My MD thinks this is likely stress and/or menopause related.
My questions to you after this ridiculously long preamble –
1) have you ever seen anything like this with oral HSV2 on full dose suppressive therapy? Or off therapy?
2) Could my symptoms be either an atypical post-herpetic neuralgia or somehow related to immune response to genital lesions?
3) Ever see anything like this that could be an atypical allergic reaction to Valtrex?
Thanks so much and apologies for the long message.
October 5, 2015 at 9:18 pm #9897
Also – to answer your questions to my initial post – have not had an IgG test -only the PCR swab of genital lesion. No swabs done of single oral lesion. No desire to come off valtrex since i work full time, and am already so emotionally unsteady that I don’t think I could tolerate a true outbreak at this time.
October 6, 2015 at 6:56 am #9901Terri WarrenKeymaster
HOnestly, this does NOT sound like herpes in your mouth to me. HSV 2 orally is a very quiet infection – it doesn’t like being there and it rarely replicates there. So it is hard for me to imagine that you could settle down the genital activity, where HSV 2 really likes to me, and that the oral stuff would be both persistent and active. Just doesn’t fit well with what we know about herpes. You could do a PCR swab of mouth and see – if the virus IS truly active there persistently, then one would expect a PCR to be positive, right? And it seems that might be true on or off meds.
Did you have a sexual contact just prior to your initial outbreak in May when you believe you were infected or do you believe you were infected well before that?
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