Misdiagnosed HSV2. We still have something though

[Amara39]

My husband and I were misdiagnosed with HSV1&2 approximately 18 months ago after my husband had an outbreak.
Since then he has had two minor outbreaks, however he suffers with symptoms much like/similar to neuralgic pain.
We have seen a host of doctors, specialists, dermatologists, counsellors etc.
He has tried Valtrex, Famviar, Nuralgic pain meds, anti-epilepsy and mild depression medication to no avail.

he has tried the self help groups in our city and a further referral to an excellent STD clinic.
I have never had an outbreak of HSV1 or 2.

At the STD clinic we were both retested and guess what, we both carry the anti bodies for HSV1 but NOT HSV2.
For 18 months we had been walking around with a misdiagnosis.
We were both tested for all other kinds of STD's (HIV etc)
Both of us had a mild bacterial infection, though we were treated for it.
However, this does not change anything for my husband.  He still has the itching, biting, pinching and burning pain on his penis. Many days are very tough, with it beginning early in the morning and lasting all day.
We have monitored his nutrition, stress levels etc. Stress does seem to be a contributing but not exclusive factor.

Has anyone share similar stories? An advice?

[Bliarg]

Hi,

Usually, genital herpes is caused by HSV-2, and oral herpes is caused by HSV-1.  However, it is not always this way around.  Genital symptoms can be caused by HSV-1 and oral symptoms can be caused by HSV-2.  

Google 'antiviral herbs', specifically olive-leaf extract and pau d'arco and see if they might suit you - this will help your bodies deal with the herpes infection and prevent future outbreaks.  It's hard to know what else to say without more specifics about his symptoms, sorry.  Good luck.

[Verysaddude]

I too experience these exact same penis symptoms daily with no relief...I have been diagnosed with HSV2....

[gracefromHHP]

At this point I recommend that your husband return to the dermatologist for further evaluation. He needs to have a skin scraping done to see if they see yeast as well as when he has obvious lesions the next time, he needs seen to have them cultured and better evaluated.


How did they originally diagnose you both? any way you can get a hold of the blood test results for both of you , both your ones from 18 months ago and the recent ones to post here for me to look at? All I need to see is the actual numeric results - ie hsv1 igg 5.4 and hsv2 igg 3.6 or whatever they are.

Is your hubby still taking any herpes antivirals?

grace

[zaidoon]

I also have the same problem. I got tested for all stds (except Herpes) and all came negative .. But I'm pretty sure i have herpes because all people with similar symptoms turned out positive. I couldn't get tested because in the UK they dont do it. Plus, i didn't have classical herpes blisters.

But my problem is all over body.. not only in my penis. Does ur husband only have these symptoms on his penis ?  

I also suffer from other symptoms along with neurolagia

[Amara39]

Hi there, thanks for your message.  I am interested to hear more about your your symptoms (as will my husband). He of course will be able to go into further detail with you.   Your message said that you suffer with the symptoms all over your body, not just in your genital region.  My husband talks about a generally weaker immune system, higher fatigue and overall lack of motivation.  Also, he says that is pain threshold is ALOT lower than what it use to be (before Herpes positive testing, for HSV1 -- a misdiagnosed HSV2 testing).

I have also been chatting to "verysaddude", who has commented on my post, I would very much like to put both of you in contact with my husband, via email.  Would that be okay with you?  I understand that this is a sensitive issue, if you're not comfortable with it then thats okay.

Looking forward to hearing from you.

Cheers, Amara

[gracefromHHP]

It is incredibly rare for folks with herpes to have all over body symptoms. for that reason a full work up with providers is needed to find out what is really causing issues.

grace

[zaidoon]

Yeah sure. All of us needs a relief. We need to let the docotos know that Herpes can do more than blisters. We need them to wrok and do some more research on the subject.