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Avatar universal

How long did you HSV1 Post Herpectic Neuralgia last?

I was exposed to HSV 1 in December.  I have been dealing with constant burning in the perineum and scrotum. More accurately Alloydinia and hyperesthesia which is a hyper pain response ton something that would not normally cause pain.

I have done daily reading and searching for answers. I have even read research the the HSV1 virus caused the these same symptoms in mice.

I know that most people who have HSV don't experience these neurological symptoms and say that HSV does cause these symptoms. I respectful do not agree. The Virus infectscan the nerves and your immune system attacks the nerve trying to attack the virus. Thus is what causes the damage to the nerves.

I never had any of the symptoms prior to having received Oral sex from a new partner who is hsv1 & 2 positive. Now I'm dealing with this on a daily basis. Thankfully it doesn't bother me when I sleep or not moving. It bothers me when sitting and when I move around. Iam taking Lyrica for nerve pain in the hope that this will allow the nerves to calm down and heal while the virus is brought under control by my immune system.

I have read that many people have experienced similar symptoms and that it diminished over a period of months or years. I'm trying to get a feel by what others have experienced of what I might expect even though I know that HSV affects everyone differently.

I'm just looking to see what other have experienced who have PHN from HSV 1 or 2.

Please share what worked for you?

Thanks
24 Responses
Avatar universal
Have you experienced any other signs
3149845 tn?1506631371
Hi, when we speak of HerpecticNeuralgia  its always associated with Shingles not hsv1 or hsv2.
1 Comments
True PHN is something that is related to shingles. This is a HSV neuropathy that occurs post infection. It may not be as intense as PHN but it is a very real issue. HSV1 & 2 can do damage to your nerves. Bill Halford who is top researcher for the HSV 2 vaccine agrees. He said this on his blog."Bill Halford December 4, 2013 at 10:30 pm #

Hi Corina,

I believe that the “constant prodrome symptoms” you describe are what I would consider a form of neuralgia; that is, (1) a sensation of pain, itching, or burning in the anogenital region that was infected with HSV-2, and (2) which is completely disproportionate to what you can see externally.

I am no neuroscientist, but my best guess is that this chronic neuralgia (chronic prodrome) is caused by inflammation in the sacral ganglia coming off the lower backbone. This is where latent HSV-2 lives….in neurons of the peripheral nervous system, and typically in the sacral ganglia coming off the lower segments of the backbone.

An important thing to remember is that the neurons that HSV-2 infects are sensory neurons. The primary cell body of these neurons is in the sacral ganglia, but they send long thin axons (like a fiber optic cable) out to the anogenital region of your body and into the spinal column (where the signals are relayed to your brain). When you are healthy, these sensory neurons only send signals (i.e., fire off like spark plugs) when there is a legitimate sensory input from the skin / epithelium in your anogenital region. A “legitimate input” that should cause neuron firing is touch, pressure, heat, pain, etc. I believe that in people with HSV-2, prodrome / neuralgia are what happen when cells of the immune system attack the infected neurons in the sacral ganglia. These attacks and inflammation in the ganglia cause the neurons to “misfire” in a way that is completely disproportionate to what is happening on the outside. Nonetheless, your brain tries to interpret these neuronal misfirings, and I believe that it interprets them as pain, itching, and burning that is disproportionate to what is happening on the surface. In many ways I believe that this is similar to the post-herpetic neuralgia that people experience after shingles, but is not nearly as intense and debilitating as what happens after shingles (i.e., a recurrence of VZV infection).

Not sure how much of that makes sense. The bottom line is that (1) constant prodrome symptoms probably means that your immune response is good enough to prevent HSV-2 reactivation events from causing recurrent lesions, a process that takes at least 5 days, but (2) your immune response is not good enough to immediately suppress HSV-2 reactivation events and the immune response that happens 3 or 4 days later drives inflammation in your sacral ganglia, and thus neuronal misfiring that tells your brain something itches or burns down there.

Please feel free to tell me which parts of this explanation don’t add up, as my explanation is based on 25% facts and 75% inference.

– Bill "

I agree with was he says because that is what I feel is going on with me right now.
Avatar universal
I would love to hear more about this. I am having pins and needles all over my body.  Is this same problem you have?  No matter what hang in there.
Avatar universal
I get the pins and needled in m y arms and legs when I sleep. My problem started as an irritation in my genital area which expanded to myou butt and back. Now I have neuralgia in my legs as well. I believe this is related to my HSV1 infection. From what I'm reading thos tupe of neuralgia is more common than thought. It is misdiagnosed because my doctors don't believe that HSV can cause this type of neuropathy.
Avatar universal
I get the pins and needled in m y arms and legs when I sleep. My problem started as an irritation in my genital area which expanded to myou butt and back. Now I have neuralgia in my legs as well. I believe this is related to my HSV1 infection. From what I'm reading thos tupe of neuralgia is more common than thought. It is misdiagnosed because my doctors don't believe that HSV can cause this type of neuropathy.
Avatar universal
Have you had your 12 week igg test yet?
3149845 tn?1506631371
Good question! As the odds he contracted gential hsv1 from the oral when she did not have any lip sores is close to zero  from a one time affair.
Avatar universal
I'm waiting on my 10 week results and will take my 12 week test next week.

It seems few people want to acknowledge that HSV can manifest in a way that causes neuropathy. I mean the other herpectic viruses can cause PHN why wouldn't HSV be capable of doing the same?

I know want I'm feeling is not some post sexual anxiety. My body is telling me that my nervous system is under attack either by an autoimmune response to the HSV virus or from the virus itself.

I am waiting on confirmation through blood testsugar but since the IgG misses the  in 10 my confidence level won't be great if I come back negative for HSV1.

I know what the statistics say but I believe I am on the wrong side of ther statistics and I have contracted HSV through unprocessed oral sex.

My symptoms have lingered for 2 months and are not fungal or bacterial. They do not respond to the topical or oral treatments used to treat dermatologic conditions. I have alloydinia and hyperesthesia which are caused by nerve damage from HSV exposure.

It is the only cause that makes sense and I no I can't be the only person who has this. I have spoken to at least one person who had my symptoms for 6 months before they faded. I'm hoping that had it also and it faded. I am currently using Lyrica to deal with these very uncomfortable feelings so that I can keep working while I hope they dissipate.
Avatar universal
I'm actually in a very similar boat. I've had burning and tingling in my groin since about 4 weeks post exposure. I'm waiting on my tests as well.

I also feel like I know my body and I know something is not right. Everyone on here seems to write us off and that it's something else not related to herpes. I guess all we can do is wait for the test results and continue to talk about it online and to our doctors to make them aware of it.

I've tested negative at 6 and 8 weeks and have had several doctors tell me I'm crazy to think I have hsv. I've had an urge to urinate since 2 days post the encounter as well which makes it very hard to concentrate.

This isn't just nerves and anxiety. It could be anxiety and something else, but not just anxiety.
Avatar universal
I think it is unfair to suggest that contributors here 'write off' people and their symptoms.

Far from it. It is incredibly important that we challenge people very strongly who have a low or zero chance of having herpes. Why? Because
- you might actually have something serious that will cause you irreparable damage if not treated
- you might allow the nonsensical stigma to damage you mentally.

Yes everyone knows there body, but you cannot know if you have an invisible virus or not.

What we do know on here is how symptoms align with testing and the chances of being infected.

In your case, you are essentially at zero for herpes.
Avatar universal
First,very sorry that you are experiencing anything similar to what I'm dealing with. Second,if yourequired exposure was from oral to genital encounter then if it is HSV is most likely to be HSV 1.

The good news is that if it is HSV 1 then it is likely to reoccur much less if at all and genital shedding of the virus is also much less. The not so good news is that there have been many studies that have shown the HSV 1 can produce a neuralgia that is similar to PHN of shingles but not as intense. It can also be a cause of alloydinia and hyperesthesia which is what I'm dealing with.

I too did not have "classic" HSV presentation with sores and blisters. I too have tested negative at 4, 8 & 10 weeks. Yet I also know that HSV1 is not detected in many people with the Herpselct test. I believe I am one of those so I will have to get the Western Blot at 16 weeks and see what that will show.

I understand your frustration with the Medical community and even the Medhelp community.
I believe they want to help us but are not able to recognize that this is an atypical manifestation of the HSV virus that causes symptoms of a neurological nature. Because they refuse to recognize this they would rather say it's not HSV it has to be something else.

To me the ingredients are there. Unprotected oral genital exposure with and HSV positive person and onset of symptoms like prodrome that persist which indicates nervous system involvement. Then negative STD tests and misdiagnosis by GP, Dermatologist as eczema or fungal infection. You take antibiotics, antifungal creams and nothing works why? Because the burning and itching sensation is caused by inflamed misfiring nerves that have been damaged by our immune system trying to attack the HSV virus.

I believe that the damage may not be permanent and will fade over time as the nerve heals and if they heal properly. At least that is what I'm hoping for in my case. I am using homoeopathic supplements to see if those my aid the nerve healing. I am eating pineapple because it contains bromelin which helps reduce nerve inflammation.

Don't lose hope my friend! I believe your symptoms are real and are HSV 1 related. It is not the end of the world but will require you to take care of your body better that you ever have and I believe in time we can beat this. Stay positive! My partner is HSV1 positive orally so that mean she will mostly likey not be infected genitally by me. Also genital to genital HSV 1 transmission is much less than that of GHSV2. So some good news.

I know the veteranstatus here are not going to agree with me on what I have said but I hope that they will search HSV1 and Neuropathy and see what is known by many researchers already. Then they may come to a broader understanding of how HSV affects the nerves.

Avatar universal
This is all entirely up to you.

However a positive HSV1 reading on the Westernblot will not eliminate the more likely possibility that you will have had an oral infection since your youth.

There have not been 'studies' on PHN for HSV1. There are documented individual cases that include the possibility that HSV1 is at play but the conclusion is nothing more that a finger of suspicion may rest with HSV1. In most of these cases (which number in the single digits out of billions who have HSV1), Zoster and CMV are also present and have not been eliminated as the possible cause. It must also be pointed out that in nearly all these cases the person has swabbed lesions.

Only you can choose what you believe. What you suggest above is nothing more than conjecture and is yet to have any scientific suggestion let alone proof.

Hence to suggest that someone who:
- has never had lesions
- has negative testing to some degree of credibility
- is experiencing symptoms that potentially only a few people in a billion have experienced as a result of HSV
- for which there is nothing that can be done beyond taking antivirals

actually has HSV helps them just how?
2 Comments
I respect your opinion and I have read many of your posts. Most are very helpful and is agreement with what the "experts" says. However, I have read many posts from people like me who are experiencing PHN like symptoms as a result of a primary HSV 1 infection. I never was infected with HSV1 prior to the encounter that I has in January. I never had the these symptoms previously. There have been cases where the Doctor's have concluded that HSV has been indicated as a cause for the patient's peripheral neuropathy.

I don't have the seralogical proof yet and even if I did I donot think I could convince you that HSV1 was responsible for my symptoms. You would rather support the majority view and by doing that you eliminate many people who are possibly affected by HSV1
I would add that the people who are affected by HSV1 neuropathy will then become medical orphan and the cause for their neuropathy will be labeled as idiopathic because the Doctor will not recognize HSV1 as the cause. For now, I have to  care of my symptoms the best way I can and use the information that is available related to HSV1 neuropathy. It is obvious  not too many believe it exists.  I here to say I believe it does and it needs to be recognized as  real although less likely  complication of HSV infection. Then a treatment plan can be developed.
Avatar universal
That not really correct, the cause is not important and it doesn't matter whether it is or isn't HSV1 or whether anyone believes or disbelieves that you have HSV1.

If you have nerve pain, then treat nerve pain and work through from the most probable causes to the least. You can have a treatment plan today. If you do not have one then you are seeing the wrong doctor.

Given the nature of HSV1, it is irrelevant whether you consider this a cause or not. Having said that though, antivirals are incredibly effective against HSV, so much so that if antivirals do not alleviate symptoms, you can pretty much guarantee that herpes is not involved at all. Have you tried a two week course?
1 Comments
I haven't tried antiviral  meds yet for fear of them interfering with accurate testing. I will give them a try at some point to see if they make a difference. I do have a Doctor who is treating me an hopefully be able to alleviate my symptoms through medications and possibly a prudedal nerve block. I agree with your approach in looking at most probable to least probable causes. I do want a definitive diagnosis, I just don't know if I will get one.
Thanks for the advice and I will share my test results and what the Doctors think is the cause when I see them again. I am not challenging your obvious understanding on HSV and the science. I'm just looking for answers with and open mind to look into the possibility that HSV could manifest in a way that causes neuropathy or that the neuropathy can occur due to the immune response to an initial HSV infection.
Avatar universal
Any update on your testing Seeker?
Avatar universal
I'm waiting on the results.  Should be here in a day or so. My symptoms persist    and I feel are changing a bit. The intensity seems less but it feels like more of my nervous system is affected.

I am taking all kinds of homeopathic supplements to help the nerves heal faster if that is possible? I am also taking Lyrica to keep the pain in check.

I am trying to stay positive about getting this thing to go into latency and leave me alone for a long while. I hope my immune system can get stronger to suppress the virus and that the neuropathy will dissipate.

I lot of people here say that HSV doesn't cause neuropathy symptoms. I hate to be the one to prove them wrong. Believe me I wish I wasn't going through this at all. I wasn't ready for this and neither was my body but it is what it is.

Thanks for asking!  I hope that you are managing well also.

I will update as soon as I get my results.  Seeker

Avatar universal
When was the last time you were tested (ie what week post exposure?)
Avatar universal
I'm waiting for the 12 week post exposure  test results. I may take the Western  Blot at 16 weeks.
Avatar universal
I got my results and Im still showing negative for HSV 1&2 @ 12 weeks. I am still having  the same symptoms although not as intense as they were initially. Have some new symptoms that are affecting my nervous system.

I still believe I have an HSV1 infection that has not shown up.

I will take the WB in a few weeks and see what that says.
1 Comments
The Western Blot came back positive for HSV1. I have never had a cold sore so I can conclude that my infection is genital.. I am getting all sorts of neurologic problems since the PHN in the groin.

This disease is seriously destroying my life.
Avatar universal
Intesting all the so called experts here are quiet after being proven wrong yet again.
15249123 tn?1478656075
COMMUNITY LEADER
Take it easy. You have been here a short time. Since march I believe. The two gentlemen that have been answering the questions fleetwood20 and life 360 have a wealth of knowledge and I for one have a great deal of respect for each of them. This is your second negative post about the folks feilding questions. Enough.

To the op. Sorry to here about your issues. Have you ever been tested before. Just because you don't get cold sores does not mean your hsv1 is not a long standing oral infection. Hsv1 when acquired genitally usually (most always) has a nasty primary outbreak with lesions and flu like symptoms. It seems odd you have not experienced this. I do hope you get this sorted out. Keep us posted if they are able to help your situation.
Don
3149845 tn?1506631371
Tell us more about the test and any numbers that showed up.
3149845 tn?1506631371
We dont consider us experts but only common people with some knowledge of herpes who volunteer here to help people. Seeker mentions he tested positive for hsv 1 but we need to know the numbers to rule out a false positive as any number 3.5 or below would fall into the false positive range and since hes tested negative outside the window period, its almost certainly a false positive.
Avatar universal
I have had postherpetic neuralgia (I believe and urologists) for 4 months now. Everyday where I have had a burning tingling sensation in my tip and groin, upper leg region. I have also experience low pressure in my urine, numbness and occasional discharge. I am HSV 1 positive which I contracted over 18 months ago. I had one lesion which cleared up and have had nothing since. Recently after a new partner I started with the pain.. It's a constant nerve pain where no anti-depressant will stop the pain, I'm currently on a host of tablets which has not helped.

I'm hoping this goes away eventually.. It's on my mind 24/7 and really starting to affect me as a person. Has anyone has any good news? Treatments or has it vanished after a certain time frame?
Avatar universal
Any update on this?
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