[Question #5013] Multiple tests - symptoms still persists

25 months ago
I am HSV1 positive - visual diagnosis early 20's cold sores.  Perfectly healthy then dated HSV2 positive woman (she is HSV1 negative).  2 months after last intimate I start to experience weird nerve pain in legs with tingling sensation.  I had no other signs of H.  Took IGG results: HSV1 : 16  HSV2 : 1.2.  Start to freak out.  Take Western Blot: HSV1 positive HSV2 NEGATIVE.  I start to get weird painful red bumps on buttocks, upper leg and lower back.  Mostly on my left side.  Burning pain in left leg persists.  I was diagnosed by a neurologist after skin biopsy with Small Fiber Neuropathy - cause unknown/idiopathic.  This is a painful annoying disease.  I have since taken upwards of 20 IGG tests always with same results of first.  I have also taken 3 Western Blots all with the same results.  I even took a Biokit HSV2 test which was negative.  My last IGG was Labcorp with Reflex results: HSV2 1.2 reflex: POSITIVE.  This caused me great concern, but received results in 1 day!  Question validity.
Problem is these red painful bumps appear weekly.  They last for a day or two.  The pain in my left leg exacerbates when bumps are present.  I sometimes take 1gram Valcyclovir and the bumps go away faster as with the pain.  Multiple MD's have told me not H, but then they all diagnose me with something different.
I was perfectly healthy before being intimate with HSV2 partner.  Question 1) Could the WB be wrong? 2) Is Labcorp reflex test valid?
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
25 months ago
There are false positives on the IgG tests, particularly at 1.2, more than an 85% chance that this is a false positive, which you already likely know because you have had three western blots.  The western blot and Biokit are correct, the IgG wrong.  Nothing that appears every week lasting for a day or two are herpes lesions.  You are deciding that because you had sex with someone who has HSV 2 that your issues must be HSV 2 but that is an incorrect correlation.  I don't know what is going on with your body but I would bet a ton of money that it isn't herpes.
I would strongly suggest that you stop taking IgG tests AND western blots and decide to accept the blot results as the truth and move on.

Terri
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25 months ago
Here's the thing.  I have spent upwards of $35k in the last 4 years of my own money to try and figure this out.  The insurance money probably equals that.  I have pretty much been ruled out for everything else.  I have seen some of the top doctors in multiple specialties on the West Coast.  The only abnormality is the HSV testing.  Prior to all this I hardly ever got sick.  I can't even remember the last time I took a prescription drug before 2015 and I'm a middle aged man.  I was a health nut before this and I'm in the medical industry.  The only variable is the fact that I dated an HSV2 individual.  I know my body well and what is happening to me is similar to hundreds if not thousands of others that have posted throughout the different HSV forums.  Too me it is too much of a coincidence that my body went off the rails shortly after my encounter. 
To anyone reading this, do your homework before you decide to be with someone with HSV2.  I compare it to playing Russian Roulette only this is much worse.  I get to live another 35 to 40 years with chronic pain.
I appreciate your time.
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
25 months ago
I really have to respond to your comment that having sex with someone who is HSV 2 positive is causing you 35-40 years of chronic pain.  That statement is not logical when you attribute the pain to HSV 2 which you do not have.  And it maligns most everyone who has HSV 2 and compares having sex with them to playing Russian Roulette.  It was two months after you had sex with her that you started getting symptoms - most anything could have happened to you in two months - been exposed to multiple things in the environment, for example, or been exposed to multiple people in your work place.  But instead, despite multiple tests showing you don't have HSV 2, you blame this person for your problem.  That's really a shame and unfair to this woman and be extension, to others with herpes. I hope you will reconsider the attribution that you are making for your symptoms to this particular encounter. In addition, I think it would be useful for you to obtain swab tests of the bumps that you are experiencing. Perhaps you have already done that but that might also help you to feel more greatly reassured that you don't have herpes. From the tone of your post, I think you are still wondering if you might have HSV, given the false positives on the IgG test. 

Terri
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