RingofFire

Hey @LovelyB91, I went to one after a year of nerve pain and being diagnosed. He didn't offer much. He just said my nerve pain could be post-herpetic neuralgia, but didn't have anything else to offer. It was a waste of time for me, but I hope it's helpful for you.

@Flowerteacher55Still nothing on this front from UW?

Hi @BayArea22 Thanks for posting! What is the nerve block? Is it a medication or like an injection? Let me know if you've seen any improvements!

Thanks, I appreciate the feedback. How long have you been dealing with this and is is HSV-1 or 2?

This was just posted yesterday for Herpes Awareness Day. They've made some great progress on a vaccine that may reduce the amount of latent herpes virus in the system by around 97%. They're also meeting next month in Washington, DC, with the NIH, CDC and leading Scientists in the field to take a serious look at the Herpes virus.

Thank you @Flowerteacher55 I am going to try not drinking for awhile to see if that helps.

Hey all, I've been around for awhile now, unfortunately. I was diagnosed back in October of last year and have had recurring symptoms ever since. I definitely have a positive HSV-2 diagnoses as I have been tested 3 times in the last year and I had very high IgG levels of ~19, ~13 and the last one did not have an IgG, but just had a positive or negative result, and it was positive. I finally visited an Infectious Disease specialist and it was a complete waste of money. They basically did a bunch of blood tests, that now I have to pay for. I hoped they could offer some additional treatment to help me, but they just sent me out the door with the same information I already had. I also spoke online with Dr. Handsfield an STD expert from the University and Washington, and both he and Terri Warren agree that my symptoms can't be caused by HSV-2, but they cannot speculate what it would be from either. I don't see how this is possible. Multiple people on this thread and on Reddit, speak constantly of the thigh burning, pelvic pain and nerve pain, but they still deny that my symptoms are associated with HSV-2. I've been to my GP about 7 times this year, a Urologist, ID Expert, spoken online to a Urologist, Neurologist and everyone says it's not from the H. I just can't see how it could be anything else. I'm supposed to get a cystoscopy Thursday, but I feel like I'm throwing away and it might even cause me further pain. I've been taking Acyclovir 2x daily 400mg. It did seem to help with the groin pinching, tingling, and inner thigh itching, although my symptoms fluctuate drastically on a weekly basis. Right after the weekend on Monday, nerve pain in thighs, genital tingling, itching, pinching, are at their highest. Usually a 5-6 level compared to a 10, last October. By Saturday, I'm feeling almost 100%, but if I have a big weekend of drinking with friends, it comes back like clockwork and I have to pop pain killers just to make it through Wednesday. Anyhow, I'm at a loss as to what it could possibly be. I don't see how so many experts can deny the possibility that this is what it is. I almost feel like I'm being tricked or something! I have no other health issues and I have been tested for all other stds and have had many blood and urine tests, all clean except for the hsv-2. I can't tell if the Acyclovir is helping or not, but I do take it, because I want to make sure I don't pass it to anyone, even though I don't have a regular partner at the moment. Anyhow, I guess I posted this so that other people can see that it definitely seems to effect everyone different. If anyone has had any luck with treatments besides Acyclovir, let me know. It would be nice if this would end some day. It's not the diagnosis that bothers me so much, but the weekly pain, that just sucks. I've tried Valacyclovir, and several antibiotics(In case it was something else) they also prescribed gabapentin and another Antidepressant, but I don't like the idea of them so I've yet to try them out. They also recommended Pelvic Floor PT, but I haven't tried it. Maybe I should just quite drinking and see how that goes (Sigh)...

@GeorgiaSimp I started taking it a month ago and I feel like it has improved my symptoms by about 20%. I've never had any visible signs of HSV-2, but since I started Acyclovir, I don't have the thigh burning/pinching groin pain and tingling as much as I have the entire last year. It was really bad for quite a few months. It's weird because Valacyclovir, wasn't working at all and it's supposed to be processed better by the body, but it didn't seem to be the case for me. @mr_hoppHave you tried valacyclovir? Did you not have any results from that one?

@Bloomer Yea, at this point he's pretty much willing to let me try whatever I want. The Acyclovir seems to be working better than the Valacyclovir, as I haven't had the bad pinching and thigh burning pain after the weekend, but I'm hoping someday I'll feel normal again. I'm trying this out for 30 days to see how it goes. Have you had luck with that?

I find it interesting that these are the only 2 treatments known for people with herpes and no one has responded as to how either has one worked for them. I wonder where all of the other people infected with the virus end up? They say 572,000 people are infected with HSV-2 every year, and yet there are only a handful of us are talking about it. Are we just the unlucky few that it sucks this bad for, or is everyone else just dealing with it in other ways? You would think this forum would be full of questions every day at that rate. This was more of a rant than anything, so thanks for reading, but really, where is everybody else?

@Sonia That is an interesting idea. I've had low back issues for about 15 years now. I think I was initially given HSV-2 about 5 years ago because I had very much the same symptoms as what I felt last fall and my Igg values were very high at around 19, which apparently indicates that I've had it for awhile. The only difference is that this time, I'm still having the prodromal groin pinching and burning inner thighs, whereas last time it stopped after about 8 weeks. It's not completely constant, but it never really goes away and it has been about 10 months now. I'm trying switching from Valacyclovir to Acyclovir since it didn't seem to be working. It seems like it could be helping a little bit, it's been a week now, but who knows. Every time I feel it's going away, within a few days it gets worse again. I guess I can be thankful there are no visible symptoms, but it still is not my favorite.

Hi @Sonia Do you have a link to that article? I'd be interested in reading that.

Hey all, I've been experimenting since October with different doses of Valacyclovir. I initially did 1000mg 2x per day for 7 days but it was already about a month into my "outbreak". I put it in quotes since I have not had any physically showing symptoms, but the internal pain has been pretty bad at times. If I could go back in time though, I would have started taking it immediately when I found out, or maybe even precautionary if my doctor would have let me. I'm wondering if my symptoms are lasting forever because I didn't start right away. I tried taking 500mg 2x/day for about a month, then upped it again to 1000mg/day for a couple of weeks. Then I just came back down to 500mg once a day for the last couple of weeks. It doesn't seem to do anything for me. I'll feel a little bit better for a couple of days, but the thigh burning, suprapubic groin-pinching feeling along with all over itchiness seems to come back. Especially after a weekend of having a few drinks. The itchiness was weird because I can feel it all over from head-to-toe. I decided to switch to Acyclovir 400mg 2x per day just to see if there's any difference in symptoms. I'm also trying out some Claritin that can maybe curb the itchiness. I tried Gabapentin for the nerve pain, but I only took one dose and I didn't like the way I felt on it. I feel like it's basically just programming your brain to experience pain differently and I don't really like that idea. But who knows, I guess it depends on how bad it gets. I just can't believe I've been dealing with symptoms for about 9 months. I wouldn't even care that much if I could just feel normal for awhile again.

@DutchyI've been told it is the titer levels of antibody response. It is a bit vague. When I tested in October my HSV-2 number was 18.6 and then I retested in April and it went down to 13. I've asked a lot of people and I've done quite a bit of searching myself and I still haven't found a really definitive explanation. Some of the more scientific documents I've found are a bit beyond my level of knowledge in this realm as well.

@BloomerIn a podcast that was put on by this website, H Opp, they interviewed Terry Warren. She said that if you have HSV-2 antibodies you can't get HSV-1. Whether I want to test that theory is another matter entirely. Haha

@BloomerI'm super intrigued by the Ozone Therapy route. Have you researched that pretty thoroughly? If you have any links I can check out, let me know. I've been looking into it a bit. Sounds promising!

@BloomerNo, my symptoms aren't really worse after sex. My issue is that I don't really know what an "outbreak" is. I've never had the tell-tale lesions/blisters. Only internal tingling, radiating thigh pain and groin pinching/pain. I don't know if this is a sign of viral shedding or not.. I've done some PT for Pelvic pain issues, but it seems to have minimal effect.

@BloomerThanks so much for sharing! I'm sorry you've had to go through so much pain from this. If you're not taking Acyclovir, have you found other ways to keep from passing it on to your partner? If I can help it, I'd like to do everything I can to keep from passing it on. I was also looking into TCM (Traditional Chinese Medicine) but it is also expensive. I'll keep you posted if I learn anything else. I've also read about Gabapentin, but I'm a bit wary of trying it.

@BloomerAlso, I had considered getting a swab done when I'm experiencing tingling, nerve pain or other symptoms to see if I'm actually shedding. I've been taking between 500 and 1000 mg/day of Valacyclovir and I'm just wondering if these are indications that I'm shedding or if the Anti-viral medicine is working. I'm dating someone new and we've used condoms every time and I take the meds religiously, but I don't want her to get it. Have you ever done a swab test to see if you are shedding? What was the symptom that indicated you may have transverse myelitis? Thank you for your help! This really sucks, but it helps to know others are experiencing the same thing.

Thanks @Bloomer I was thinking my next step would be to see a neurologist or infectious disease doctor. I definitely want to get to the bottom of this. I'm still having intermittent symptoms by the week/day. I've been experimenting with different dosages of Valacylovir to see if it reduces symptoms, but its tough to tell. After a weekend of drinking, my symptoms are increased probably 10 fold. For a few days after I get nerve pain in my inner thighs/backs of legs, pinching groin pain and overall body itchiness. Never any visible signs though. I have a couple questions if you wouldn't mind answering them: What where your symptoms and why were they atypical? What treatments worked for you and are you still treating it?

@Flowerteacher55Well, big news here today. I decided to get another hsv-2 test for a few reasons. If I'm going to be taking Vacyclovir for an extended period of time or I want to seek out alternative treatments, I want to be sure I actually have HSV-2. Anyhow, I got retested, since Biotin was a concern with my original test results. I had the test done by the same lab and that test was unfortunately positive. My IgG level was 13.00 this time. My previous test in October of 2021 was 18.6. So it's down 5.6 points, but no one has been able to tell me what the difference is in how many points you have. The doctors say it's a pass/fail test, but then why is there a number associated with it at all? I don't understand that. So, anyhow I guess that closes the book on whether or not I'm dealing with a false positive. Anyhow, the weird thing for me is that I've had multiple physicians tell me that my symptoms for the last 7 months are not related to HSV or any other sti. Apparently I'm a complete anomaly. I have no lesions down there, but when I drink multiple alcoholic beverages over a weekend, I get nerve pain in my inner thighs, pinching around my groin and occasionally pain in my penis. There's never a rash or anything else. Sometimes my entire body will itch the night after drinking. Anyhow, I'm posting this mostly for people who are experiencing these symptoms and every doctors tells them that there's no chance it's from herpes, because it may very well be. HSV-2 is the only smoking gun in my case. I've been tested for every other sti and I have no health issues beyond this. What sucks is that I have these prodromal symptoms on a nearly weekly basis and I don't know if it's just me feeling it, or if I'm actually shedding the virus while this is happening. I really want to make sure that I don't spread it to anyone else. The weird thing is that I've taken Vacyclovir and it doesn't do anything noticeable for me. I still feel that same pins and needles and pinching in my groin. I'm hoping it helps to block the virus, but there's really no way to find out, and that really sucks.

@Flowerteacher55Basically, we've already covered a lot of ground. He's thinking that there's very little chance it's a bacterial issue, since I've already tried several antibiotics. I also asked if he though it could be something associated with HSV-2, but he said that is usually more localized pain. He noted there are a lot of nerve endings associated with the bladder and there could be potential spasms happening there, which could be a source for pelvic pain. I don't know. I wish there was a more clear pathway. But I guess this is all I can do for now.

@Flowerteacher55 Ok, another update here. Saw a Urologist this week and he is suggesting Oxybutynin as he thinks the nerves issues could be bladder related. I've also been taking this OTC Magnilife Leg and Back Pain relief Homeopathic supplement I found at Walgreens. I've been taking it for a week and have had significantly improved the nerve pain I've had going on in my inner thighs and groin. I obviously can't say for sure that's what's helping, but I though I would post it here. Also, Lidocaine works really well for muscle and nerve pain. I've found it doesn't burn like Menthol based gels.

Hello @Flowerteacher55 Any updates from University of Washington?

Hello @Flowerteacher55 Just thought I would provide a quick update. I finished the Doxycylclene and while it did seem like it helped, it did not eliminate symptoms. I returned to the doctor after speaking with a Urologist online who suggested a 2 week cycle of Ciproflaxacin to see if that would clear things up. Well, I'm almost finished with the treatment. I only have 2 days left, but I'm still feeling a decent amount of groin pain and itchiness on my inner thighs. It really kinda sucks. It seems to be much worse when I'm sitting down. I still don't know if this is actually an HSV-2 infection or something completely different. Hopefully someday I can figure it out. For the time being, it really sucks. I haven't had sex since this started out of fear of giving something to someone else, but I haven't had a chance to be retested. Everyone I've talked to though thinks that my symptoms don't align with HSV-2. So either I have HSV-2 and it's causing some super weird symptoms, I don't have it and this is something else, or I have it and I also have something else that's causing these other symptoms on their own. Anyhow. That's the news on this end. Kind lame, but atleast I'm better than I was back in October, November.