dr. hhh/hook help! lymph node pain from ghsv-1

[cacciato_]

doc,

i contracted ghsv-1 in august of 2012 (confirmed via swab).  during the initial OB the lymph nodes in my groin swelled on the right side (normal from what i understand).  the initial OB was fairly mild and slightly increased in duration due to OTC hydrocortisone cream.

so, here we are, January of 2013 (four months in) and the lymph nodes in my groin (now on the right and left side) are still swollen and tender.  i have had no noticeable OBs that i can tell, but the lymph node swelling has been a continued problem.  i had complete STD tests done at both 5 and 11 weeks and everything came back negative.  physical exams by doctors hasn't revealed anything either.  healthy in all other ways.

the pain will subside for a while, but then i'll feel a burning/aching sensation, followed by swollen and tender lymph nodes.  it can be a little painful, but very annoying physically and mentally.  it's almost always worse after i've been sitting for long periods of time.

also, per my dermatologist, i'm still using a OTC hydrocrortisone cream (1%) in the groin area periodically for an ongoing mild rash.  i've been dealing with the rash for a while and it never caused lymph node swelling.

any ideas?  this lymph node pressure is really driving me nuts. all the doctors have told me to wait it out, but they don't really seem to know much about herpes in first place.  any ideas?  anything i can do?  doc says the next thing is a needle biopsy, but he was skeptical it would turn up much.  

thanks much.

[Edward W Hook, MD]

This will be my final comment.  The evidence is strong that you do not have herpes and that your lymph node swelling is not a manifestation of herpes, HIV or any other STD acquired through the exposure you have described.  Continuuing to pursue STDs is silly.  I would suggests you solicit the input of an internal medicine specialist who can take a comprehensive new look at your symptoms.  EWH

[cacciato_]

Dr. Hook,

just to let you know, the biopsy came back negative (just reactive lymph node).  unfortunately, the lymph nodes in my groin continue to swell on and off.  also, i now have a tingling, burning, warmth, and overall discomfort in the testicle and perineum area.  it comes and goes, but it is almost always worse after sitting for long periods of time.

like i said, had brief unprotected sex (10 seconds), received oral sex, and some "grinding" about two months ago.  STD tests came back negative at 6 weeks.  that included a HIV DNA PCR.  also, had the weird low negative for HSV-II and negative for HSV-1 (although i had a prior positive culture for hsv-1 6 moths prior)

i'm guessing this isn't herpes related?  i have not had a recurrent outbreak.  no visible symptoms.  is it worth seeing a urologist?

i apologize for the continued correspondence, but this has really been making life pretty miserable.

thanks so much for your time.

[Edward W Hook, MD]

Cultures are rarely wrong unless they are mislabeled or fouled up in the lab.  I would advice you to believe your culture results.  The further testing you describe may help to clear things up.  EWH

[cacciato_]

Doctor,

I'd love to believe I didn't have HSV, but I think I'd be lying to myself.  However, it's been nearly six months now and the "acceptance" phase has definitely set in.  Thankfully, no recurrences either.

So, called the NP at PPH and got the lab work.  Seems pretty black and white: "positive for herpes simplex virus type-1.  Typing was confirmed by monoclonal antibody microscopic immunoflouresnence".

In my mind it sounds like the most reasonable conclusion is that I do indeed have ghsv-1 and the low positive on the Igg was most likely a false positive.  Do you have any reason to believe differently?  If that's the case, what a crappy test.  It would literally be wrong on both my HSV-1 and HSV-2 status.

I think I'll wait another 3 months and try another Igg test.  If that doesn't clear this mess up, I'll go ahead and order a Western Blot.

[Edward W Hook, MD]

You are correct about your value being in the "low positive" range where false positives are common.

EWH

[cacciato_]

Doctor,

I truly appreciate your quick response.  Unfortunately, PPH is closed today, but I will be giving them a tomorrow and try and speak with the NP that told me about the positive ghsv-1 culture.

From what I now understand, my 2.08 is a "low positive" and a more accurate test will most likely be needed.

I deeply appreciate your ongoing help in the matter.

[Edward W Hook, MD]

I would call PPH. this makes little sense.  Your HerpeSelect result is in the range where over half of results are falsely positive.  I doubt that the symptoms you reported recently were due to HSV and wonder if you have HSV at all. EWH

[cacciato_]

Sorry, I re-read my earlier posts and just wanted to clarify.  This has been my first Herpes blood test.

Thanks.

[cacciato_]

Doctor,

Wow, I feel like this has been a wild ride.  I've been having the same thing with the swollen lymph nodes, so today they went ahead and did a biopsy.  I'll let you know if they find anything, but I seriously doubt it.

By total coincidence I also received another round of STD tests back today.  I had protected sex with a woman about 6 weeks ago.  The condom did break and we had about 10-15 seconds of unprotected sex.  I also received and gave oral sex 2-3 times with the same women.

I started having some warmth, tingles, and burning around my scrotum and tip of my penis.  Although I thought it was in my head, I decided to go ahead and get tested again just to be sure.

So, here's where it gets interesting.  In August of 2012, I had a confirmed genital swab for HSV-1 at my local Planned Parenthood.  Today, I receive blood work saying I am negative for HSV-1 and positive for HSV-2 (2.08 on Herpeselect).  It's fair to say that I am confused.  I never saw any lab work from the culture, but the NP there said it was positive for HSV-1.

I am extremely confused.  Should I contact PPH?  I'm extremely confused.  BTW, I'm taking 500 mg of valtrex every day.

Thanks.

[Edward W Hook, MD]

Welcome to our Forum.  I've reviewed your earlier interactions with Terri.  Your situation is certainly complex.  It sounds like you've had genital HSV, atopic dermatitis, and perhaps folliculitis as well.  Each of these processes can cause swollen, tender lymph nodes which can persist even after the inciting process has resolved.  It sounds to me as though you have good doctors looking at this and they have the advantage of being able to examine you, something that I cannot do.  As I consider what you have reported the big question is whether the associated pain/discomfort is improving or not. If it is improving, I would urge you to be patient and let things resolve.  On the other hand, if it is not, a biopsy may be appropriate.  The other thing I think may be helpful is to try to have the same health care provider examine you repeatedly over time.

I hope my comments provide some reassurance, it sounds as though you are being well cared for.  I do not think this is all due to continuing HSV.  EWH