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?
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.
Tell us more about the test and any numbers that showed up.
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
Intesting all the so called experts here are quiet after being proven wrong yet again.
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.
I'm waiting for the 12 week post exposure test results. I may take the Western Blot at 16 weeks.
When was the last time you were tested (ie what week post exposure?)
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
Any update on your testing Seeker?
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?
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?
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.
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.
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.
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.
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.
Have you had your 12 week igg test yet?
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.
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.
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.
Hi, when we speak of HerpecticNeuralgia its always associated with Shingles not hsv1 or hsv2.
Have you experienced any other signs