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CSF PCR showed low positive for HSV2

I was hospitalized for meningitis. After many tests that took several days to complete, the infectious disease doctor determined that it was aseptic (viral) in nature, and that HSV2 was the cause. I was completely devastated. I have never had any herpes symptoms. I have only had one (tested, negative for HSV1 and 2) sexual partner in the past year. I went in for an aB IgG blood test for HSV1 and 2 a few months ago, and it was negative for HSV1 and equivocal for HSV2 (1.0). They told me it was nothing to worry about, based on my circumstances.

Anyway, several months later I am in the hospital for meningitis after having a bad fever, headache, and stiff neck for two days. The CSF tests came back a few days later while I am still in the ICU, and the doctor said that it was herpes.

I am very skeptical of this. First of all, they were trying to push me into agreeing that it was influenza instead of meningitis, and only after the LP did they stop pushing that on me. After the LP but before the PCR results, they said it was probably herpes even though they had no evidence to suggest it. They kept assuming convenient diagnoses just to get me through the system. I don't have any herpes symptoms, and have never had any kind of outbreak. The PCR quantitative results were supposed to be on a scale of 0-2,000,000, with positive results being over 100. My result was 161. I have read case studies where people with HSV-caused meningitis and encephalitis have had numbers in the tens or hundreds of thousands. I told the doctor that I couldn't accept his diagnosis, so he is sending me in for another IgG and an IgM blood test next week. What will I do if that is equivocal or low positive? My long-term relationship and mental well-being are at stake.

I took screen shots of my test results, with all personal information cropped out. Could you look at these and tell me that there's hope that I don't have HSV2?

http://imgur.com/xvGhP
http://imgur.com/NIivb
http://imgur.com/xvGhP
9 Responses
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239123 tn?1267647614
MEDICAL PROFESSIONAL
Thanks for the follow-up.  Positive for HSV-2, correct?  HSV-1 is less likely but not impossible.  All the comments that follow assume HSV-2; some of them would be different for HSV-1.

I'm not happy you have HSV-2, and I understand you aren't keen on the idea.  But the good news is that the diagnosis is confirmed.  Sometimes resolution of such a mystery lifts a load of worry even if the news is not what was hoped for.

Based on the blood test results -- weakly positive becoming strongly positive -- you probably were infected with HSV infection in the 1-3 weeks before onset of the first episode of meningitis.  That timing should clarify the source of your infection.  That partner -- who is your current partner, yes? -- should be retested.  Regardless of her reportedly negative prior test, she can expect a positive result this time.  (If negative, she should have the Western blot test.)  Assuming that result, you need not worry about transmission in that relationship.  People are immune (or at least highly resistant) to new infections with the HSV type they already have.

Finally, I agree with your analysis of the benefits of anti-HSV treatment with valacyclovir and do not understand the ID consultant's reluctance to prescribe it.  Indeed, I would recommend a somewhat higher than the usual dose of 500 mg daily; 1.0 g daily should be considered.  A case could be made to wait for a genital outbreak and/or yet another episode of meningitis, but I'm sure you don't want to go through that again, if it can be avoided.  And treatment indeed will reduce the chance of sexual transmission to a new partner (but will make little if any difference with your current partner, as noted above).  If your primary care doc has any doubt about it, consider printing out these comments as a basis for discussion with her -- and perhaps for the ID doc as well.

Feel free to continue this dialog if I can help further.
Helpful - 0
Avatar universal
The one thing that worries me is, the (ID specialist) doctor is reluctant/unwilling to prescribe antivirals because I haven't had an outbreak or any symptoms. I'm waiting for him to call back to discuss it further, but I may try to go around him to my primary care doctor and hope that she will agree with me. I don't want to ever have an outbreak, and I want to be as non-contagious as possible, so if there are no major side-effects, I want to take valacyclovir or whatever is currently recommended on a daily basis.
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Avatar universal
The IgG result was strongly positive (<5.0). I guess that's as far as I go. I still have no idea how I got this. It was either while I was wearing a condom, or with someone who got a false negative on an IgG test. It's a long string of rare circumstances ending in meningitis.

Thanks for taking the time to reply.
Helpful - 0
239123 tn?1267647614
MEDICAL PROFESSIONAL
Two crucial facts remain true:  HSV-2 is by far the most common cause of recurrent aseptic meningitis, and your CSF HSV-2 PCR was positive, even if weakly so.  All the other issues are relatively minor in comparison.

Have the follow-up HSV-2 blood test.  (You need not have the Western blot immediately; if the IgG result is strongly positive, that will settle it.  Do the WB only if it's still weakly positive or negative.)  I would also recommend your current partner have another HSV-2 blood test, perhaps also with WB if the IgG test is negative.

Please return to let me know the follow-up test results.  Until then I'll have no other comments or advice.
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Avatar universal
I've only had two partners in the past year. The first one I had sex with once, with a condom, and she had no visible signs of herpes. The condom did not break or slip off.

The second one is the woman I'm with now. She says she was tested for HSV2 around the same time I was -- last summer, shortly before we met -- and that her test was negative. She insists that she has not slept with anyone else since she was tested, and I don't have any reason to believe she's lying. She says that she has not had any symptoms of herpes.

The only things that I can think of in terms of potential symptoms are: she had mid-month bleeding about two months ago (very early period), and about a month after that, I had a bout of prostatitis, which I have had twice in the (somewhat distant) past. Again, there have never been any sores or blisters or anything like that. I just suddenly developed a high fever, then a bad headache, then my neck got stiff and sore, and I went to the hospital worried about meningitis. I never got a straight answer out of the hospital doctors about the cause; I had to wait for the PCR and culture tests to come back, and they went directly to the infectious disease doctor.

I'll see about adding the Western Blot test to the order form the doctor gave me for the blood test clinic.
Helpful - 0
239123 tn?1267647614
MEDICAL PROFESSIONAL
An additional thought, which I should have brought up in my initial reply:  There's a good chance your first meningitis episode occurred during your initial infection with HSV-2.  That would explain the equivocal HSV-2 antibody test result, since it takes several weeks to become positive.

Instead of going directly to Western blot, you should follow your doctor's advice and just have another routine (IgG) HSV-2 antibody test.  My bet is that it will be strongly positive.  If not, then the same specimen can be forwarded to the University of Washington clinical laboratory in Seattle for Western blot.  (But I still recommend against the HSV IgM test, which will not give helpful results whether positive or negative.)

This analysis also may give a clue about the source of your infection.  Instead of going back several months in contacting partner(s), talk first with any partner(s) you had in the 2-3 weeks before your first meningitis episode.

Please continue to keep me posted as additional test results become available on you, your partner(s), or both.
Helpful - 0
239123 tn?1267647614
MEDICAL PROFESSIONAL
There are some population groups in which half have HSV-2, so it is possible your doctor isn't wrong about that.  But of course virtually all HSV-2 infections are sexually acquired.

Your general excellent health has no bearing on your diagnosis.  As for lifelong recurrent meningitis, that seems to be rare.  Most people with the problem have a only a handful of episodes; and like overt genital herpes outbreaks, most stop having meningitis episodes entirely within a few years.  In the meantime, anti-HSV treatment probably will effectively prevent them.

Nothing you say changes my opinion or advice.  Don't let your skepticism interfere with continuing proper diagnostic evaluation.  Have the HSV Western blot test for sure.  Also, you might consider contacting any sex partner(s) you had in the year before the first meningitis episode, asking about herpes, and perhaps encouraging her (or them) to be tested for HSV-2.
Helpful - 0
Avatar universal
Thanks for your reply. The doctor who gave the final (so far) diagnosis to me was an infectious disease specialist. However, he said some things that I know aren't correct, like "50% of the population has HSV2" and "you didn't necessarily get this from having sex."

And, as I mentioned, both the specialists and the hospital residents made an early uninformed decision that this must be herpes and then variously tried to prove it. They put me on an Acyclovir IV treatment for three days, and the meningitis didn't get any better for that treatment. The headache was so bad that they had to give me IV painkillers normally reserved for cancer patients.

So can you see why I am holding out hope here? There are so many rare outside possibilities and narrow views to evidence that I just can't accept this terrifying thought without solid facts. I find it hard to believe that if the PCR had detected 99 stands of DNA, that is a negative result, but 161 is positive, and some people go into the hundreds of thousands. I'm an exceptionally healthy person. One of those people who never gets sick. I don't smoke or take drugs. I'm athletic and thin and reasonably young. It's extremely hard to accept that I'm going to have recurring meningitis for the rest of my life because of an STD that I otherwise wouldn't know I have.

I will post the blood test results when they are in. It'll be a week and a half or so, because they go directly to the infectious disease doctor and that's a separate appointment.
Helpful - 0
239123 tn?1267647614
MEDICAL PROFESSIONAL
Welcome to the forum and thanks for your question, which is very intersting.

In fact, it seems quite likely you really do have HSV-2 of the central nervous system.  You give a very typical story for a rare syndrome originally called Molleret's meningitis, for A French physician (pronounced Moleray) who first described recurrent aseptic (non-bacterial) meningitis of unknown cause.  It was later called benign recurrent lymphocytic meningitis.  As that name implies, it typically isn't serious ("benign"), but it tends to keep coming back ("recurrent"), and the main abnormal cells in the cerebrospinal fluid (CSF) are lymphocytes.

After decades of being recognized but the cause unknown, about 20 years ago -- with development of improved diagnostic tests -- it became apparent that most affected patients had positive blood tests for HSV-2; and that the virus could be found in CSF of the patients.  About 10% of cases remain unexplained, but 90% of patients in fact have recurrent HSV-2 meningitis.  HSV-2 also explains a fair proportion of people with non-recurrent (initial episode) non-bacterial meningitis.  In addition, treatment with anti-HSV drugs like valacyclovir (which has no biolotical effect except to inhibit HSV) reduces the frequency and severity of recurrent episodes.

What's going on?  Most such patients have unrecognized genital herpes, although some do have symptomatic genital herpes outbreaks from time to time.  HSV-2 is tropic (attracted to) neural tissue; and in a small minority of cases, the virus migrates to and sets up infection in the central nervous system.  When it reactivates, as HSV infections are prone to do, the result is recurrent meningitis.

The atypical feature in your case is your low positive HSV-2 IgG blood test.  Most people have strongly positive results.  However, the PCR test for HSV-2 in CSF usually is very reliable.  I can't comment on the possibility that your PCR result is only weakly positive, but according to usual standards, you had a positive result -- i.e. HSV-2 DNA was present in your CSF during a typical episode of meningitis.

Your doctor is on the right track about further.  However, I would recommend against the IgM test.  IgM testing for HSV-2 is notoriously unreliable; here is a thread that discusses it:  http://www.medhelp.org/posts/show/248394    What you should have at this time is a Western blot test for HSV-2 antibody.  WB is the gold standard for  detection of HSV-2 antibody.

If your doctor is not an infectious diseases specialist, I strongly recommend you request consultation by one.  He or she will be in the best position to assure the best diagnostic tests are done and, assuming HSV-2 infection is confirmed, to advise you about suppressive treatment and/or management of recurrent meningitis episodes.

In the meantime, don't be overly alarmed.  As the name itself implies ("benign"), this is rarely serious.  Of course there would be implications for future sexual partnerships, and you should be on the alert for possible mild symptoms of recurrent genital blisters or sores.

This may not be the reply you hoped to have, but I hope it is helpful to you.  I'll be interested to hear the results of further diagnostic tests and the opinion of an ID consultant.

Best regards--  HHH, MD
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