Perpetual Burning and Swelling...

[wwb]

Thanks for the informative site.   It is the best I have seen.

My problem started in 1991 with an ulcer half way up my penis about the size of a quarter.  The ulcer was painless and healed quickly.  My doctor at the time diagnosed HSV-2.

After the ulcer healed, I started having a very obvious stinging and burning sensation around my groin.  Occasionally I would also notice very small (micro) blisters just under the head of my penis.  They are never red, barely visible and could otherwise go unnoticed.

From 1991 to ca 1998 I used acyclovir to treat my symptoms with little effect.  The stinging and burning persisted with only an occasional break of a week or two.  Finally, in 1995 the symptoms started to subside and I remained relatively symptom-free for 10 years.  I even had a blood test in 2002 to see if I had the disease (negative - and I don't remember which test).

In December 2007, the symptoms returned in force, persist to this day, and neither acyclovir nor valtrex seem to have any effect.  Having read your excellent site, I am planning to get the BioKit HSV-2 test next week.

Does this history sound like HSV-2?  Perhaps I have a HSV-2 along with another condition.   Any thoughts would be most appreciated.  And thanks again for the wonderful site.

[gracefromHHP]

thank you for continuing to add to your post - it really is helpful :)

the odds of this being herpes related is pretty darn low with all your repeated tests.

I wouldn't be surprised if it's an issue from bike riding - chaffing and pressure on your tailbone from the bike seat.  

[wwb]

UPDATE: After a 30 mile bike ride, a large blister appeared on my groin while I was having symptoms.  I met with my doctor within 48 hours and he took a PCR sample. The ulcer was open and emitting fluid.  The results arrived yesterday and were negative for HSV1, HSV2 and VZV.  This tends to confirm what you have been saying all along: This is not an HSV infection.

My doctor was quite certain the results would come back positive for HSV2.  He says he knows of no other STD that features a dull ache in the lower spine, stinging and burning in the groin, swollen glands, nerve pain down the inner thighs, and occasional blisters on the groin and/or penis.  I have studied the alternative STDs (including Granuloma Inguinale) and nothing seems to fit.

Question: When another blister appears, should I request both a culture (for a bacterial infection) and another PCR?  If yes, request a PCR for which virus?

Thanks!

[wwb]

Thanks for the follow-up.

I did see my dermatologist in October and he continues to insist I am suffering from nuerolgia.  He is baffled by the negative serology.  He saw nothing unusual in my groin area.  He recommended I see the infectious disease guy.

Along with the Valtrex, I recently kicked my 4 gram/day "addiction" to lysine.  This has only made my symptoms worse.  Hopefully I'll be able to get a valid PCR test very soon.

There is obviously a lot about my infection that is not understood and my spouse is not taking any chances.  With my symptoms, I don't blame her.

I will report back as soon as I get a culture.

[gracefromHHP]

I never recommend dmso.

there is no reason for your spouse to use gloves to touch your genitals or vice versa.

I'm still not convinced your symptoms are due to herpes at all.   are you still following up with your dermatologist regularly?

[wwb]

UPDATE: In October 2010, I saw an infectious disease specialist regarding my mystery STD.  He said my symptoms sound like HSV-2 but the negative serology - from 3 separate tests - indicate a different condition (he was unable to propose a candidate).  He recommended dropping the Valtrex and attempting to get a PCR on any subsequent lesions.  I dropped the Valtrex the following week and observed no change in symptoms for about 2 months.

In January 2011, 5 small blisters ruptured on my penis while having sexual intercourse with a condom.  Unfortunately, the weekend and my work schedule precluded me getting to my doctor until after the blisters had vanished.  Fortunately, the condom apparently prevented transmission.  My spouse and I are now waiting for more blisters and another chance at a culture.  I don't think we will be waiting very long.

In the meantime, the swelling, burning, aching in the groin continues along with nerve pain down my inner thighs, a dull ache in my lower spine and a persistent itch near my anus.  I talked to my GP about using DMSO to relieve these symptoms and he said while he could not prescribe DMSO for herpes, using DMSO to relieve the burning/aching in my groin would probably do no harm.  I am now cautiously considering this option.

I am far from desperate, but my marital sex-life is quickly going down the drain.  My herpes-free spouse is understandably very concerned about any sexual contact that does not include underwear and 2 latex gloves, never mind condoms.  Given that Valtrex has not helped much (my current "outbreak" is now 3 years long and counting), would a short course in prescription grade DMSO be such a bad idea?

[wwb]

Thanks.  We are looking past herpes.  Unfortunately, when we consider all the symptoms, some not listed above, it's tough to get away from herpes and/or syphilis regardless of the test results.  Nothing else matches.

My inclination is to stop the acyclovir and see if the symptoms get any worse.

[gracefromHHP]

Honestly I wouldn't bother paying to post this to the herpes or std experts. You've testd negative repeatedly with multiple tests for herpes.  It's time to look past herpes as a cause.

grace

[wwb]

The dermatologist diagnosed neuralgia but was at a total loss as to what pathogen was the cause.  I went ahead and ordered a confirmatory UW Western Blot test which just came back negative.

I would like to post a 1 page, detailed chronology of my symptoms to one of the doctors on the MedHelp pay site.  Maybe one of the detailed symptoms will strike a cord.  Both my GP and I are at a loss as to where to turn next given that I tested negative for syphilis c1992.

[gracefromHHP]

Definitely not wining any awards for promptness....lol.


At this point I'd go for the dermatology appointment since typically it takes so long and you can establish a relationship there. Even though your work up will be limited without symptoms present, typically then when you do get a recurrence, you can call and they get you in faster since you are an established patient.

This really doesn't sound like herpes and multiple negative tests support that as wella s failure to respond to herpes antivirals. it's time to look for other causes.  The dermatologist might even want to do some basic allergy testing too.

grace

[wwb]

Regarding my post of Sept. 06, 2008 at 3:00 PM:

I did not break any records for promptness, but I recently had my doctor order HSA Igg tests for both HSV1 and HSV2.  They just returned NEGATIVE.  My doctor and I are baffled.  We have setup a dermatologist appointment but there is no visible rash at this time to culture.  The stinging/burning in the groin persists 24/7/365 with some weeks much worse than others.  Valtrex seems to do no good.

In you experience, how common is a false negative with the Igg tests?

wwb

[wwb]

Thanks for your comments.  I will proceed with your recommendation and update my post with the results.

Best regards -

wwb

[gracefromHHP]

Actually what you need is a dermatologist and full work up including lesion cultures and typing done. lesions the size of a quarter would be very unusual for herpes and I wouldn't be surprised if it isn't something else going on. You've had negative blood tests to boot and herpes antivirals don't do diddly for you - all signs that this isn't really herpes and your initial visual diagnosis was probably wrong.  

grace