ExhaustedGirl1

Have you ever been tested for hsv1 in the past? Your positive hsv1 blood test could be an oral infection that you’ve had for a long time— it’s hard to assume it’s a genital infection. The only way you can really know if it’s a genital infection is to get a swab done (preferably PCR). As you say you’re quite symptomatic, do you think you could go in to get swabbed by a doctor while this is happening? If you’ve been taking Valtrex and this is infact herpes, I would assume the medication would stop you from experiencing consecutive outbreaks. This is why I think it’s worth exploring other potential diagnoses and to try to pin down the location of your hsv1 infection with a swab.

Oh man, I’m so confused now. I thought I might finally be coming to terms with this not being HSV1 but now I feel like I’m right back into it. So you’re taking daily suppressive antivirals now? Maybe that’s why your symptoms have started to get better? I’m assuming you had a PCR swab done of that spot and not a viral culture then given the nature of the spot on your labia? I’m curious about about these UTI symptoms because I had a doctor try and tell me that’s what I was experiencing too... did those symptoms start before the sore? How soon after exposure? I’m sorry for all the questions I’m just really lost and confused and have been dealing with this for almost a year now. All those nerve sensations and stuff, those were before the antivirals and then they started to go away once you were on them?

I see... did the lesion open and have fluid and what area was it in if you don’t mind sharing? I’ve never had like a real blister per say. For me I would have been infected at the end of September 2017 if I do have HSV. This has been constant since December. Some days the burning is better or worse for me but it’s pretty constant. And my skin inflaming like an allergic reaction and getting red when pressure is added is pretty constant. Nothing really changes it or sets it off for me. The burning is worse when I’m wearing tight pants, a lot of the time I’ll get like an icy hot feeling from my belly button to me ankles when I’m wearing tight pants. I’m not sure if we’re experiencing the same things?? I’m so confused 😞

That makes me really nervous... how were you diagnosed? Did you have a primary outbreak and sores and stuff? Is the irritation constant and does your skin get red like an allergic reaction? Do you constantly have to shave?

I unfortunately don’t have an answer for you and I haven’t been diagnosed but I have been feeling burning, itching etc in those areas constantly. Is yours constant or does it come and go?

Sorry for what you’re gojng through 😞 if I were you I would not be taking valtrex right now. It’ll mess with your IGG scores when you get tested later if you keep taking it. Wait it out until 16 weeks and then take it if you get a diagnosis. Also, if you see something show up, get it swabbed. Valtrex might suppress something from showing up and delay a diagnosis if herpes is what you have, although I think it sounds unlikely. I would call and see what test this was that your doctor did so you can get some answers.

I did post on the forum there and speak with Terri a bit, she didn’t seem to think this was herpes related and I’m sure after she learns of my negative western blot she will say that I need to move on with the thought that this is herpes. Just thought I could get some insight here if anyone can relate to parts of my story etc? Or knows something else that this could be?

I have been jumping around from forum to forum looking for answers, so if you recognize me-- I apologize about the repeat posts but I am so stumped and it seems there are a handful of people on here with atypical symptoms that might be able to provide some insight. I'm 23 and female. At the end of Sep 2017 I had my first ever sexual encounter and drunkenly allowed someone to perform oral sex on me unprotected-- it lasted all of about 2 minutes. We didn't see each other much afterward but I did learn he's had around 50 partners. I've always chosen to be abstinent and my first time giving in... this unfortunate thing happened. I just finally got him to take a blood test and it came back positive for hsv 1 although he says he's never had a cold sore. 1.5 - 2 months after I got this itchy red patch on my inner thigh that stayed there for about 1.5 months. It was a little bit raised, flaked and scabbed a bit, and expanded. I think the scabbing happened because I scratched it until it potentially bled but I'm not sure. https://imgur.com/IcMLamK (was like this for about 2+ weeks before turning into the next picture) https://imgur.com/SkRvJWU (only looked like this for a few days I believe) https://imgur.com/NcT0FY6 (slowly faded and was like this for several weeks) A month or so into having this rash, the feeling of my pubic hair became unbearable and itchy. To this day it still needs to be shaved all the time. My skin also started inflaming from waist down, with burning red patches appearing whenever I add pressure. At the start of this I would lay in bed and feel burning neuralgia from my waist down. My skin gets indented by clothes, chairs etc so easily now. This is the side of my hip after laying down for a few minutes https://imgur.com/y0syXzs This has been chronic In Jan I got the flu with congestion, back ache, headache, fever. It was going around my office though. I got super watery discharge at this point. I would stand up and it would just gush out. This discharge lasted for a few months but then my body started to balance out again. I had weird brown spotting at times too and my cycle has been off, it used to be very regular. Recently the discharge happened again for a little while. I would have on and off lower back pain and headaches too, especially during Jan and Feb. I've experienced some discomfort in my groin area too that comes and goes, a bit of an achy feeling but I'm not sure I'd say it's exactly swollen lymph nodes. It's like there is swelling in my pelvic area but it's more just like a feeling of unwell. Coincidentally I had an ultrasound scheduled while these symptoms were going on and I asked them to check my lymph nodes as well, so they did. My doctor reviewed the images and said they were not swollen. It seems there's always some random bump or another cropping up. Recently i've had this (see below), which I realized looks just like and is in the same spot as something that showed up in April (there were more little ones that have since gone away within a day). Each time these goes away so quickly Recent: https://imgur.com/t4RSV6T (it's still a tiny tiny spot 13 days later and peeled a bit at one point) April: https://imgur.com/ulygKJb I can hardly wear any even sightly tighter pants because my thighs itch and feel like they're burning. Sometimes I get random all over itching everywhere on my body. I've also had rashes on my ribs. Other random concerning images over time: Further away from my vagina, closer to my bum. I believe I picked at this https://imgur.com/HKAjk5c Recently this same area has been bothering me and feeling tender but with no redness or bumps at all.The irritation is still slightly there today, it's been about 5-6 days and I think I've had this feeling once before months ago. Could this have been an outbreak and now this feeling is prodrome that just hasn't manifested into sores? Occasional red spots https://imgur.com/DVPp6HQ On my hip (I had something similar to this PCR swabbed and was negative) https://imgur.com/a/pp8V3bY I got tested via IGG 5 times varying from 9 weeks - 10 months post exposure, always negative for both types. Knowing the possibility of a false negative HSV 1, I did a Western Blot at 21 weeks that came back negative. I want to believe my blood tests but I can't figure out what on earth else could be wrong with me. All the doctors are stumped. I've read a handful of cases about people who continuously test negative (especially for hsv1) and I can't help but think that I'm one of those people. I never got the original rash swabbed, doctor's told me it was a bug bite, eczema, fungal, you name it. I had some PCR swabs done at a free clinic of some bumps that ended up being ingrown hairs, an anal fissure, and a random blister/bump on my bum. They didn't offer internal swabs so I went to another clinic when I noticed a red abrasion inside my vagina and slight discomfort urinating. They did PCR swabs on two occasions of this that were negative internally. On my own expense, I sought out another PCR internally for the redness when I was having many symptoms, she also reluctantly swabbed my hair follicle that had some redness. Negative a well. I had 2 punch biopsies of my pubic hair area done, and my derm said if herpes was causing it the test would have picked it up. It simply came back as "inflammation" and she said I likely have hyper dermagraphism or pressure urticaria although odd that it would be pretty localized. Antihistamines don't help except possibly relieving some of the thigh itching. I've read online about a connection between viral infections and chronic hives although they don't really seem to be chronic. I'm currently in a long distance relationship with someone who I really care about, and the thought of giving him this accidentally once we're hopefully ready to be intimate scares me. I'm living back home in Canada for a few months (most of this unfolded in California) where PCR swabs aren't offered. I honestly don't know what to do anymore. Spinal tap? Nerve biopsy? I just feel like I've already gone above and beyond. I'm hesitant to try taking antivirals because I'm a very anxious person and worry that if I'm having a few better days I might just associate it with the medication even if it's not actually helping and make my anxiety worse, plus I won't be able to get them since I haven't tested positive. Any idea what on earth is going on? Chronic pressure urticaria from my belly button and down--mostly stopping at my knees, nerve issues, itching, watery discharge, bumps, rashes, swelling... it sounds like herpes to me. I've been thinking I might have lyme disease and that rash on my thigh was a bug bite. I tested positive for lyme via Igenex, but it seems odd to have so many vaginal symptoms associated with it (there are also many other symptoms not mentioned here-- the list is quite long) Thanks for any insight and sorry for the novel.