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PHN, HSV2, and Zoster
I am a 40 year-old female. I was diagnosed with HSV2 13 years ago when I was hospitalized for meningitis. My recurrent meningitis was attributed to HSV2. I had a silver-dollar size lesion on my left hip. Following my second hospitalization within one year for this, I was also diagnosed with hypogammaglobulinemia, and was treated (successfully) with IVIG for four years. All subsequent HSV lesions were always on my left hip, buttock, lower left back, or left side of the genitals. I have never had a lesion on the right side. I was placed on suppressive therapy, first Zovirax, and now Famvir, which I take religiously. Suppressive therapy didn't work well, and I continued to have frequent outbreaks of varying severity. The bad ones were often accompanied by meningitis (diagnosed via lumbar puncture the first several times).Immediately following my second hospitalization, I began to have severe shooting pains down my left leg. The leg pain, with severe fatigue, increased and grew to involve my left calf and foot. I then had muscle weakness, and had difficulty walking. As years went by, the pain continued to grow, despite the decrease in frequency of outbreaks. It now involves my left arm, hand, and left eye. My neurologist has also noted decreased skin sensivity, differing reactions to heat, and areas of total numbness on the skin on the entire left side of my body, head-to-toe. I take neurontin and vicodin daily for pain. I've reacted badly to lidoderm, duragesic, and stronger narcotics. Because I'm the mother of two small children, I need to be functional; so I choose to be under medicated, and cope with a modicum of pain all the time. The fatigue really wears me down. All of the doctors I've seen have told me what I've also read here: HSV2 does not cause PHN. Is it possible that the HSV has caused a Zoster infection that has gone undetected? The thinking in my case has been that I must have Zoster because I have PHN - Yet I have never been diagnosed with Zoster, and have been diagnosed with HSV2. I am apparently not the only one diagnosed with HSV2 who has PHN. Could there be a contingent of people with HSV who develop PHN? Is anyone researching this? And -should I be tested for Zoster; if so, what test should be done?
Hello-
I read your post and wanted to let you know that I have had phn from the start. In fact, that has been the only real symptom of my hsv2, other than minor lymph swelling. The phn and swelling were what brought me to the doctor. Due to my description of the nerve pain which I described as radiating down my left leg, the doctor immediately suspected hsv and did a type-specific blood test to confirm the diagnosis. I have no other complicating illnesses, and I am a young, otherwise healthy person with no history of other std's. My immune system is in good shape and I do not have hiv. I take acyclovir daily, and when I do not take my pills on time, the pain comes back. My partner was tested after I tested positive, and he also had hsv2, but was apparently asymptomatic. Based on my doctor's anecdotal experience with hsv2, as well as my own, and the relative similarity between zoster and hsv2, I'm wondering why anyone would doubt that both might cause phn. It seems kind of silly. I doubt anyone has done an empirical study on the issue. Okay, I'm fairly positive they haven't. I've checked several databases. Anyone seeking grant funding out there want this one? Of course, I already know the answer, but I think it's time it was documented.
I read your post and wanted to let you know that I have had phn from the start. In fact, that has been the only real symptom of my hsv2, other than minor lymph swelling. The phn and swelling were what brought me to the doctor. Due to my description of the nerve pain which I described as radiating down my left leg, the doctor immediately suspected hsv and did a type-specific blood test to confirm the diagnosis. I have no other complicating illnesses, and I am a young, otherwise healthy person with no history of other std's. My immune system is in good shape and I do not have hiv. I take acyclovir daily, and when I do not take my pills on time, the pain comes back. My partner was tested after I tested positive, and he also had hsv2, but was apparently asymptomatic. Based on my doctor's anecdotal experience with hsv2, as well as my own, and the relative similarity between zoster and hsv2, I'm wondering why anyone would doubt that both might cause phn. It seems kind of silly. I doubt anyone has done an empirical study on the issue. Okay, I'm fairly positive they haven't. I've checked several databases. Anyone seeking grant funding out there want this one? Of course, I already know the answer, but I think it's time it was documented.
Thank you, Doctor. Famvir has certainly decreased the frequency of outbreaks, but not sufficiently. I understand that correlation does not mean causation - Still, I can't imagine that the neuropathy is random, given that I never had any signs of it until just after my second outbreak. I do indeed have a whole team of docs - Infectious Disease, Neurologist (pain specialist), and Immunologist. There seems to be a lot of passive shoulder-shrugging when it comes to my treatment. I don't blame them - 13 years is a long time to have little improvement, regardless of treatment. One thing that bugs me when I think about it, is that if my pain symptoms had been more aggressively treated at the outset, there's a chance it might not have progressed to the point it has. When the neuralgia first started, my M.D. thought it was interesting, but no one recommended pain management (despite my asking) until I couldn't walk. Very frustrating. I will take your advice, though, and have the next lesion cultured. Now that I have a "watched pot", we'll see how long it takes to boil.
If there's anyone else out there, with a similar combination of HSV2 and PHN, with or without hypogammaglobulinemia, I'd really like to hear from you. I'll check this thread from time-to-time.
Thanks!
Thanks!
MEDICAL PROFESSIONAL
As you undoubtedly know, but as a bit of education for other forum users: "Benign recurrent lymphocytic meningitis" was described many decades ago; sometimes it was called Molleret's meningitis after a French doc who was one of the first to describe the syndrome. Contrary to general medical knowledge, most meningitis isn't a horrible deadly disease, and viruses cause most cases. Most viral meninitis is unpleasant to be sure, but generally not dangerous. "Benign recurrent" tells the story; affected persons had recurrent meningitis, often 2-3 times per year or more. For most of its history, the cause was unknown. About 20 years ago the cause was found: over 90% of cases are due to recurrent HSV-2 infection. In rare cases, the latent HSV-2 infection in genital herpes is not in a dorsal nerve root ganglion, but in the brain; and in addition to (or instead of) genital area recurrences, repeat outbreaks of brain herpes result in meningitis.
In most cases, there is no known reason why herpes follows this otherwise atypical and unusual course, but I have heard of other cases like yours: people who have a significant abnormality of immune system function, such as hypogammaglobulinemia. That such a person may also have other atypical manifestations of HSV is not particularly surprising. However, I am a little surprised famciclovir has not been more effective in controlling your genital-area (hip, buttock) recurrences or meningitis, and if not done, I suggest you ask your neurologist or infectious diseases provider to collect a specimen for culture with your next cutaneous outbreak, to test for antiviral resistance. If your HSV remains susceptible, you can safely use quite large doses; or consider trying valacyclovir, which can be safely taken in doses up to around 4 grams daily.
As to other management (narcotics, neurontin, etc), I have no opinion or advice; that stuff is well outside my expertise. However, if an infectious disease specialist and a pain control specialist is not involved in your care, it probably would be worth the time and energy to have such evaluations.
I have never said HSV doesn't cause postherpetic neuralgia, only that it has not been proved to do so; but absence of proof is not proof of absence. In fact, I suspect true PHN can rarely be due to HSV. But proving it is another thing: with 25% of the US population having HSV-2 and several percent having otherwise unexplained neuropathies, nationwide there must be thousands of people with both problems--without any relationship between them except random association. In other words, it is difficult to know for sure whether or not your neurological syndrome is due to your HSV-2 infection. As to whether you could also have herpes zoster, I have no particular reason to suspect that. But if your hypogammaglobulinemia has made you more susceptible to an unusually vigorous form of recurrent HSV-2, presumably it could do the same if you also have shingles. In any case, the next time you have a cutaneous outbreak, it would make sense to test it for VZV as well as for drug-resistant HSV-2.
I"m sorry I cannot provide more direct help, but I hope this information is useful in your communications with your health care providers. Good luck-- HHH, MD
In most cases, there is no known reason why herpes follows this otherwise atypical and unusual course, but I have heard of other cases like yours: people who have a significant abnormality of immune system function, such as hypogammaglobulinemia. That such a person may also have other atypical manifestations of HSV is not particularly surprising. However, I am a little surprised famciclovir has not been more effective in controlling your genital-area (hip, buttock) recurrences or meningitis, and if not done, I suggest you ask your neurologist or infectious diseases provider to collect a specimen for culture with your next cutaneous outbreak, to test for antiviral resistance. If your HSV remains susceptible, you can safely use quite large doses; or consider trying valacyclovir, which can be safely taken in doses up to around 4 grams daily.
As to other management (narcotics, neurontin, etc), I have no opinion or advice; that stuff is well outside my expertise. However, if an infectious disease specialist and a pain control specialist is not involved in your care, it probably would be worth the time and energy to have such evaluations.
I have never said HSV doesn't cause postherpetic neuralgia, only that it has not been proved to do so; but absence of proof is not proof of absence. In fact, I suspect true PHN can rarely be due to HSV. But proving it is another thing: with 25% of the US population having HSV-2 and several percent having otherwise unexplained neuropathies, nationwide there must be thousands of people with both problems--without any relationship between them except random association. In other words, it is difficult to know for sure whether or not your neurological syndrome is due to your HSV-2 infection. As to whether you could also have herpes zoster, I have no particular reason to suspect that. But if your hypogammaglobulinemia has made you more susceptible to an unusually vigorous form of recurrent HSV-2, presumably it could do the same if you also have shingles. In any case, the next time you have a cutaneous outbreak, it would make sense to test it for VZV as well as for drug-resistant HSV-2.
I"m sorry I cannot provide more direct help, but I hope this information is useful in your communications with your health care providers. Good luck-- HHH, MD
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Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
