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Worriedgal89

Anyone else have severe hsv1 genital?

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So I have had constant prodrome symptoms every day for about 4 years now , no doctors can seem to help me . When I take valtrex the symptoms seem to improve . What I am experiencing feels like nerve pain ,aching, bruised feeling , and itching with some redness . This is the same feeling I had with my first outbreak 4 years ago . I recently had an igg blood test and was surprised to be negative for hsv2 and positive for hsv1 . A specialist I have been speaking with says type 1 would never cause these symptoms . The only other thing I can think of it post herpetic neuralgia or some sort of nerve damage , does anyone know if this is possible ? And if antivirals help PHN ? I am soooooo done with this and feeling like I will have to live with pain forever , it's ruining my sex life with my husband. If anyone can refer me to a good doctor for this I will travel ! 

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There are many other genital problems that can cause persistent pain not related to herpes. Have you been tested for other gynecological problems like vulvodynia or endometriosis. It could also be neuropathic (nerve damage).

 

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I have been tested for every std and infection , I mentioned vulvodynia to my doctor and he basically said it didn't exist , which is annoying. I just don't understand if it was vulvodynia why it would respond to antivirals? And does vulvodynia cause redness and raw spots and swelling ? It definitely feels like nerves though because the skin on my legs and bum are very sensitive .. I just don't know what to do . And if this is the herpes why am I getting outbreaks like every 2 weeks ? I have had it for years 

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5 hours ago, Worriedgal89 said:

I have been tested for every std and infection , I mentioned vulvodynia to my doctor and he basically said it didn't exist , which is annoying. I just don't understand if it was vulvodynia why it would respond to antivirals? And does vulvodynia cause redness and raw spots and swelling ? It definitely feels like nerves though because the skin on my legs and bum are very sensitive .. I just don't know what to do . And if this is the herpes why am I getting outbreaks like every 2 weeks ? I have had it for years 

I feel like I’m in the same boat as you! I have genital hsv, don’t know if it’s type 1 or 2 because my doctors brush me off with the “its the same thing.” Anyway, I’ve had this for about 10 years now. I don’t even remember the first year and a half without suppressive meds being as bad as it is now WITH the meds. I was on acyclovir for 8 years and did not have any symptoms, I would get what felt like a yeast infection every 3 months right before my period when I was on the pill so I stopped the pill and never has those symptoms again. For the past almost 2 years now I have had constant pain, discomfort, irritation, redness, nerve twinges down there. I switched to valacylovir 1g a day and it has helped a little bit but I am still feeling the symptoms, it’s almost like I feel like I’m constantly on the verge of an outbreak but I don’t get typical sores. I’ve noticed during ovulation is when I feel the most discomfort inside my vagina (sorry if thats tmi). I really would love to know what is going on with my body. Everything you read and every doctor says that as the years go on your body suppresses this thing and you barely get outbreaks. All lies. If you go through this for him he will read more and more people are experiencing this. Let me know if you find a specialist. I’ve been debating on setting up an appointment with an infectious disease specialist because I’m at my wits end.

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@ash128083 I’m a guy but I have the same story. Normal symptoms for 1.5 years, then went suppressive acyclovir and had zero symptoms for over 6 years. Then I had an explosion of neuro symptoms along with weird OBs all over my body (not all at the same time). The neuro problems were from my scalp to my toes and severe. They included tingling, twitching, spasms, altered taste, night sweats, gastrointestinal problems. It drove me to put a loaded gun in my mouth and tried to convince myself to pull the trigger but didn’t. 

I saw doctors who didn’t believe me or didn’t care. Most of these sensations are exactly the same as I would get back when I got classic OBs, but with the addition of many more, so there’s no question they’re caused by HSV. 

I have no solution for you other than endure. I finally found a doc who believes me and has tried lots of creative stuff and we settled on a regimen of tramadol and gabapentin just to treat the pain and lift my mood a bit. My symptoms eventually did calm down a lot over that course of 3 years, but sometimes they flare up and cause me to become suicidal again. 

This virus is absolutely not “just a skin condition” lol. It’s a wrecking ball to your nervous system. 

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On 9/14/2019 at 6:36 PM, elnino said:

@ash128083 I’m a guy but I have the same story. Normal symptoms for 1.5 years, then went suppressive acyclovir and had zero symptoms for over 6 years. Then I had an explosion of neuro symptoms along with weird OBs all over my body (not all at the same time). The neuro problems were from my scalp to my toes and severe. They included tingling, twitching, spasms, altered taste, night sweats, gastrointestinal problems. It drove me to put a loaded gun in my mouth and tried to convince myself to pull the trigger but didn’t. 

I saw doctors who didn’t believe me or didn’t care. Most of these sensations are exactly the same as I would get back when I got classic OBs, but with the addition of many more, so there’s no question they’re caused by HSV. 

I have no solution for you other than endure. I finally found a doc who believes me and has tried lots of creative stuff and we settled on a regimen of tramadol and gabapentin just to treat the pain and lift my mood a bit. My symptoms eventually did calm down a lot over that course of 3 years, but sometimes they flare up and cause me to become suicidal again. 

This virus is absolutely not “just a skin condition” lol. It’s a wrecking ball to your nervous system. 

Thanks for the reply , I totally agree , there is something going on with herpes that specialists and doctors don't understand . It must damage the nervous system in some people for sure . I have wierd scalp sensitivity and skin sensitivity all over my body now too , it has also driven me to contemplate suicide . I don't care that I have herpes anymore , just make the stupid symptoms go away! It makes you feel so dirty and gross having to think about itchy burning crotch all day every day for years , and the people I vent to about it don't want to hear it anymore .. including my husband . I wish there was a cure , and was so bummed to hear about the therapeutic vaccine failing 

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I’ve had hsv2 for almost a year. I have constant itching and sensitivity in my nether region. I’ve taken acyclovir and Valtrex but neither stops my symptoms. The only thing that stopped my symptoms are the herbs from synergy pharmaceuticals. It is NOT a cure (like the website says) but has stopped my constant itching and greatly reduced my sensitivity. 

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On 9/14/2019 at 6:36 PM, elnino said:

@ash128083 I’m a guy but I have the same story. Normal symptoms for 1.5 years, then went suppressive acyclovir and had zero symptoms for over 6 years. Then I had an explosion of neuro symptoms along with weird OBs all over my body (not all at the same time). The neuro problems were from my scalp to my toes and severe. They included tingling, twitching, spasms, altered taste, night sweats, gastrointestinal problems. It drove me to put a loaded gun in my mouth and tried to convince myself to pull the trigger but didn’t. 

I saw doctors who didn’t believe me or didn’t care. Most of these sensations are exactly the same as I would get back when I got classic OBs, but with the addition of many more, so there’s no question they’re caused by HSV. 

I have no solution for you other than endure. I finally found a doc who believes me and has tried lots of creative stuff and we settled on a regimen of tramadol and gabapentin just to treat the pain and lift my mood a bit. My symptoms eventually did calm down a lot over that course of 3 years, but sometimes they flare up and cause me to become suicidal again. 

This virus is absolutely not “just a skin condition” lol. It’s a wrecking ball to your nervous system. 

This virus is the fucking worst! I honestly think getting on suppressive therapy actually does something to the virus, like somehow makes it stronger so the meds start not working or you need to take an insane amount for them to work. These doctors need to get their shit together and try to find something to get this virus under control for people. I honestly don’t know what’s worse, the physical or mental suffering. I’ve doubled up on the lysine and vitamins and whenever I have “that feeling” I’ll take a half of the 1g Valcyclovir so I do a full gram in the morning and then half for a few days and then I’m ok for a few weeks. But anytime I feel a pain, or anything I fear the worse. I don’t ever remember having symptoms like this. I was going to see if changing how I take the medication, 500mg 2x a day, so its constantly in my system. Who knows what will work. 

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13 hours ago, ash128083 said:

This virus is the fucking worst! I honestly think getting on suppressive therapy actually does something to the virus, like somehow makes it stronger so the meds start not working or you need to take an insane amount for them to work. These doctors need to get their shit together and try to find something to get this virus under control for people. I honestly don’t know what’s worse, the physical or mental suffering. I’ve doubled up on the lysine and vitamins and whenever I have “that feeling” I’ll take a half of the 1g Valcyclovir so I do a full gram in the morning and then half for a few days and then I’m ok for a few weeks. But anytime I feel a pain, or anything I fear the worse. I don’t ever remember having symptoms like this. I was going to see if changing how I take the medication, 500mg 2x a day, so its constantly in my system. Who knows what will work. 

Yes I have heard twice a day instead of once can help , try that for sure ! 

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