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Avatar universal

HSV2 and Nerve Pain

Hi HH,

I contracted HSV2 17 months ago after having sex in and around a jacuzzi and later in the house .  Did this increase my risk?    My primary outbreak was a few vaginal blisters.  I was misdiagnosed and given 2 days of Famvir.   5 days later I had a severe rectal outbreak.  I was then very sick for 3 months with flu like symptoms and severe itching in my bikini area.

In prior posts you did not feel nerve pain was a direct result of HSV2.    What is it a result of?  Please expand on this?  I have had severe burning, itching, nerve twitching, and zapping with this disease in my pelvic and rectal area.  Could the intense burning and itching in my rectal area that I struggle with now, have been minimized if I was given 10days of Famvir initially?  

Several months I discontinued Famvir for a few weeks and got an intense vibration running the length of my inner and outer labia, as if someone was running an electrical current through my nerves.  That was followed by 2 weeks of severe pelvic aching after resuming my meds.

We know that this disease attacks the sensory portion of the nerve cell. Does viral load effect the intensity of the disease?   Did I get more than the average person when I was innoculated?   Is this why I'm having such a hard time with this virus?   Does this have something to do with cellular immunity?  

If I continue to have what I call phn for the next say 5 yrs with no actual blisters how much am I shedding the virus?   More than the average H person because of these daily symptoms?  Do I fit the stats or am I more contagious?  

On a final note a friend was diagnosed with a GIST stomach tumor 9cm and had surgery to remove it in February 09.  It does not appear to have metastisized and his biopsy came back as a 1 on the oncology scale.   He was prescribed Gleevac for one year.   I do not think it would be wise for us to have sex right now as he has a compromised immune system and I have so many symptoms.   Your thoughts?  

Much Thanks

33 Responses
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300980 tn?1194929400
MEDICAL PROFESSIONAL
Let's work through your questions:

1. As both Dr. Handsfield and I have said in earlier posts, for a person to have continuous pain, no matter what the location, suggests that the pain is not due to HSV.  Similarly, it is virtually unheard of for someone to have 3 months of continuous feeling poorly, flu-like symptoms and puritis (itching skin) due to herpes - first episode or otherwise.  The same sort of general statement relates to what sounds like the failure of your pain to improve/change in a meaningful fashion with antiviral therapy – this makes HSV most unlikely.  This suggests that the symptoms you describe may be, in part or entirely, due to some other cause.

2.  Herpes (both HSV and Herpes zoster) are infections not of skin but of nerves.  the virus remains in nerve cells and re-activates from within nerves, actually traveling along the course of nerves when recurrences occur to cause skin lesions.  During this re-activation process, the interaction of the virus and the nerve causes nerve stimulation which our brain interprets as pain.  With Herpes zoster, the residual pain can last for long periods of time - we call this post-herpetic neuralgia.  With HSV this is not the case.  Previous studies of anti-viral therapy indicate little benefit of antiviral therapy for PHN.  PHN can be managed with other medications and this should be done in consultation with a neurologist.  

There is no information to suggest that viral load has anything to do with the course of herpes, once the infection is established.  Viral shedding from genital herpes is intermittent and hard to predict.  It may occur with the brief prodromes which occur prior to recurrences but I am not aware that here is any relationship between viral shedding and PHN.

As far as your partner is concerned.  His immune state may be compromised by his therapy.  Just how much is difficult to say.  At the very least, condoms are a reasonable idea if you are sure that he has not had HSV in the past.  If he has, there is no reason for concern.  EWH
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Avatar universal
Well, this is most perplexing since I have read NUMEROUS cases of people experiencing the exact same thing after contracting HSV.   It seems like you guys are missing part of the puzzle because these symptoms occur after H is contracted, not prior to H.   I have also read where people where sick with flu like symptoms for several months after contracting H and/or after several years of having H felt like they had the flu right before and outbreak.  

You response unfortunately was not insightful.  What are these symptoms caused from then since I did not have them before H and had no prior health issues?   And where do I go to find the answer?
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300980 tn?1194929400
MEDICAL PROFESSIONAL
You asked for my opinion and I gave it. You do not have to believe it.  Neither of us, in a combined period of over 50 years of taking care of persons with and at risk for STD has EVER seen such a situation.  Nonetheless, you can find plenty of people who THINK they have neuropathy due to HSV but none of the other HSV experts we have ever spoken to have ever seen a convincing case either.   I am sorry you are disappointed.  I am also worried that your certainly that this is due to HSV may keep you from seeking other, non-HSV causes and/or solutions.  

If you decide to look elsewhere, as aI said above, I would suggest working with a neurologist.

This is all  I have to say.  I wish you luck in getting this sorted out.  EWH
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Avatar universal
Okay EWH then that suggests more testing,  more doctors, more time away from work etc.   And that was my thought are you guys actually in the field treating patients, seeing this one on one, or just observing from the lab?  By your response it appears that you have been in the field for a combined 50 yrs, which would give you a lot of credibility.

It is very frustrating having your life turned upside after working out 3x a week, being healthy, and feeling great -  I do have allergies - but that is manageable this is not.  I have spent  a lot of time with doctors and speaking with people in the field who have H.  I will agree nerve pain is uncommon for a long period of time but not uncommon wit people that have H.

I do wonder if any of these experts have HSV2 and have experienced nerve pain as a side effect of this virus.  

I do not have any history of immune disease in my family.  I am determined to find the answer, so no worries.  I am however exhausted right now from dealing with this disease.  So I need to retackle this when I am rested.

I will say that I took the valtrex/acyclovir when I was initially diagnosed and cognitively it was worse than dealing with the virus, thus I switched to Famvir and have stayed there ever since.  

I have been to 2 infectious disease specialists who misdiagnosed me and put me on mass does of antivirals, an expert at the University of Irvine who was helpful, and now I'm going with a pain management doctor who administered an epidural injection that was unsuccessful.  

I decided to try the nuerontin/gabapentin  that he prescribed and started taking it on Sunday but unfortunately seem to be sensitive to meds as they make me dizzy, etc.  

I appreciate your feedback and will keep an open mind.  

Respectfully,

Blueskies
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300980 tn?1194929400
MEDICAL PROFESSIONAL
Good luck on this Blueskies.  I don't doubt that you are having the discomfort you describe.  As I said, earlier, that antiviral therapy has had no impact, as well as the fact that your symptoms have been nearly continuous really do not suggest that this is HSV but something else.

As for the gabapentin, the drug has side effects and many doctors startr with low doses and work up.

I hope that you will get some relief.,  EWH
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Avatar universal
Dr. Hook,
In the research I have done in speaking with people who have HSV2, many said the 1st 2 yrs they had continuous outbreaks about 2 weeks apart.

Please clarify a few things for me.   When the virus reactivates it travels down nerve pathways and I assume retreats back into latency, or into the root of the nerve.  How do we know that the nerves are not irritated during this process and take several days/months to calm down?  How do you know that pain created in these nerves with HSV can't last for long periods of time?  Or that it is interpreted by the brain for longer periods of time?  

You stated that my pain/symptoms did not improve much with anitviral therapy - my response to that is neither does my HSV2.  The medication  seems to have some impact stopping the virus from replicating but not entirely.  I have verified that many people with HSV2 have not had success with antivrals in the first few yrs of contracting the virus and their immune systems were not compromised.

Is it possible that my HSV is a very "active" virus - not all HSV2 behaves the same I assume and dies down with time?  Your thoughts?  

Much Thanks
Blueskies


Helpful - 0
300980 tn?1194929400
MEDICAL PROFESSIONAL
In some (about 25%) persons with recurrent HSV the virus does effect the nerve as it travels along its length to cause a recurrence, this irritation is typically a mild tingling or itching, usually at the site where the recurrence then occurs within the next day or so.  For this pain to persist chronically, beyond a few hours or at most a day is simply not described.

Regarding the response to therapy,  a major problem with herpes is that discomfort/pain is hard to measure, as is response.  As a result, scientists tends to (appropriately) rely on randomized, placebo controlled trials in which neither the patient nor the doctor knows whether they have received drug or not until the study is over.  This helps to sort out both issues of placebo effect and failure of symptoms to resolve.  With the exception of persons who are profoundly immunosuppressed due to cancer chemotherapy, HIV or some other similar severe illness, the pain of HSV is not continuous and typically responds to antiviral therapy.  I do not mean to sound dismissive but it is clear that in some people the symptoms attributed to herpes are not due to the infection but some other, more poorly understood process.

EWH
Helpful - 1
79258 tn?1190630410
I actually just attended a workshop on vulvar pain, and there are lots of possible causes. These include allergic reactions, dermatologic disorders such as lichen planus and lichen sclerosis, hormonal factors, pelvic floor dysfunction, nerve entrapment, etc. I'm assuming you've had a pretty thorough workup, but just in case, you might want to look for a vulvar pain specialist. Some sites that might help you along the way:
http://www.cvvd.org/
http://www.nva.org/  
http://www.pelvicpain.org/
Helpful - 0
300980 tn?1194929400
MEDICAL PROFESSIONAL
From Time to time Dr. Handsfield validate our answers for different clients by comparing notes.  This evening we discussed several clients including you.  He comments that your post and experience is rather similar to one he had nearly a year ago in which his answers were also similar to my answers to you.  I have posted the link for you -      http://www.medhelp.org/posts/STDs/HSV2--PHN/show/491205 .  The problem is that neuropathic pain such as yours is not all that common and can be caused by a tremendous number of things.  Herpes on the other hand is a very common illness.  Thus it is not a surprise that some persons with neuropathies also have herpes.  In your case, as in the case for the link provided, the absence of a meaningful response to antiviral therapy makes active herpes an unlikely contributor to your neuropathy.  As to whether this might be some sort of problem related to more permanent damage due to herpes, perhaps but again, this is just not something described in our literature despite much study.  

I realize these comments don't provide you with much help for your discomfort.  As I said before however, the proper way to address this problem, no matter what is causing it is with a neurologist.  EWH
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Avatar universal
Dr. Hook,
Thank you very much for the response and the other links.   One last question - it is my understanding that HSV2 does not cause permanent nerve damage.  Is this correct?  

Blueskies
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300980 tn?1194929400
MEDICAL PROFESSIONAL
Not to our knowledge.  EWH
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Avatar universal
Monkeyflower thank you for the links.  I researched this several yrs ago when I was having some burning on the inside of my vaginal area, not the outside.  And it was NOTHING like what I have now.  I will stay opened minded, however, the onset of this pain started when I contracted the virus and also includes my rectal area where I had a severe outbreak.    That worsens when H kicks up with menses and has been consistent.  

Dr. Hook thank you for taking the time to follow up with me and for the additional explanation, it was helpful.  I called UCLA today and may see a doctor in their neurology department or UC Irvine  -  as I was impressed with the specialists I saw when I initially contracted the virus.  

The nerve pain will probably resolve itself when the virus calms down - after I've spent a small fortune on specialists - murphy's law '-)

Best Regards,
Blueskies

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Avatar universal
Some of the antidepressants also work with chronic pain states. Genitally focused anxiety symptoms could also be a manifestation of a depression, so you might want to look into antidepressants as another option.
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Avatar universal
That's an interesting comment "genitally focused". That's definitely not the problem that I know FOR SURE.    I've covered that area, thanks.  

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Avatar universal
Dr. Hook,
I had a recent blood test done by  Lab Corp to detect HIV and HSV antIbodies.  HIV negative.   My concern is the HSV 2.  After 72 weeks I am still coming up .91?   I have stayed on suppressive therapy since I contracted HSV 2 in Oct of 07 which was confirmed by culturing many  ulcers with my primary outbreak.

I have had several outbreaks while taking suppressive therapy.  I would think that even though I stay on Famvir I would still be building antibodies??    Is there research confirming a slower immune response while taking antvirals?   In the long run is it better to try and let your body fight the virus on it's own?  

Your help is appreciated.
BlueSkies

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300980 tn?1194929400
MEDICAL PROFESSIONAL
I must admit that for you to not have developed antibodies to HSV-2 nearly a year and a half after acquiring proven HSV-2 is a bit unusual.  At the same time, we know that 3-5% of people with HSV will not develop HerpeSelect detectable antibodies in follow-up studies which go out as far as 6 months (they don’t go further than this).  There are no data that I know of however  to suggest that failure to make antibody predicts a different natural history or clinic course.  In addition, there are no studies of persons with your unusual circumstance to refer to or to guide my suggestions, just clinical experience.  This being the case, my thoughts are there are no reasons for you to go off suppressive therapy and to put up with what would be likely to be an increased frequency and severity of recurrences.  Because this is opinion, I have asked several colleagues about their experience in this setting as well.  If I hear differently from them I will be sure to let you know.  EWH
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Avatar universal
Thank you for the reply.  I would appreciate it.  I spoke with a virology expert at UC Irvine shortly after I was inoculated.  We were discussing my combined Igm which was 4.75 and he said, that number is very indicative of a primary outbreak.   On the most recent test it was 1.34.  He also said from their research they do not believe a person builds antibodies as well on suppressive therapy.

Becoming dependent on suppressive medication to manage this virus weighs on my mind heavily.   I think that's human nature.  I'm afraid I'm doing more damage by staying on suppressive.  From the research I've done it seems long term suppressive therapy is very hard to discontinue due to more severe outbreaks.

At the same time I'm still struggling on suppressive with outbreaks, so my immune system appears to need all the help it can get.   Trying to figure out the right thing to do is exhausting :(
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300980 tn?1194929400
MEDICAL PROFESSIONAL
I've heard back regarding your questions from both Dr. Handsfield and Dr. Anna Wald, one of the world's leading herpes researchers.  We all agree that there is no known relationship between an unusual antibody test result (i.e your lack of antibodies in the HerpeSelect) and the natural history of herpes infections.  Nor do any of us think that taking suppressive medication would weaken your immune response to infection, making the infection more persistent or more severe.  We see no reason for you to stop taking suppressive therapy if it is helping.  Dr. Wald, reading this longest thread ever for this site with a fresh eye, adds several points that are important to emphasize and point out:

1.  Infections differ according to what is causing them.  Hence it is not good to generalize from other viral infections to herpes infections.
2.  In herpes infections, IgM tests have proven again and again to be worthless and more often misleading than not.  I think we would all urge you not to focus on, or even consider, your IgM results.
3.  Suppressive therapy has been used by persons with HSV infections for years and years without problems.  Acyclovir, valacyclovir and related drugs are among the safest drugs for infectious diseases we use.  If you are having "breakthrough" recurrences on your current suppressive therapy and are taking the drug only once a day, we would suggest taking it twice a day, not stopping.

Hope this helps.  EWH
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Avatar universal
Dr. Hook,
What do you mean generalize from other viral infections to herpes infections?  HPV comes to mind and I have never had any signs of that virus - all of my paps have been normal.  I'm negative for all stds and the HIV I just wanted ruled out - again.   In an effort to cover all the bases, I had my GYN call in a an rx for Flagyl to cover bv as we discuss that often on my H site.  

Intuitively I do not think that will change the symptoms of itching and vaginal burning on the "outside" of my inner and outer labia.  And, as I mentioned discontinuing the antiviral changed that itching and burning labia pain to a very uncomfortable nerve vibration.   In other words it gets worse off the antiviral.  And yes, I am considering seeing a neurologist :) although this nerve vibration goes away with the antiviral and was constant OFF the antiviral.

Yes, I know you all feel the IgM is worthless from your other posts.  But I thought the igg was accurate?  I take the Famvir 250 2x a day.   Thank you VERY MUCH for the extra effort on this thread.  

BlueSkies
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Avatar universal
I feel the need to clarify this - on the antivirals the labia itching and burning comes and goes through out the day.   There are moments I feel normal and that is nice.  Off the antiviral that labia vibration - nerve twitching - is constant as if the virus goes unchecked and it is replicating out of control irritating the nerves.   If this is not related to H I'm not sure why the virbration goes away with the  anitvirals.  

I'm staying open minded over here :)  but I get the impression that the med stops the replication of the virus and the itching and burning is the clash of the med keeping the virus mostly under control.  
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300980 tn?1194929400
MEDICAL PROFESSIONAL
Thanks for the clarification.  I don't think it changes my (our) recommendations or thoughts.  I would consider a trial of doubling your dose of famciclovir to see if it gives you more relief or reduces the frequency of the more typical recurrences you may experience. There is little medical downside to taking the increased dose.


My statement about the issue of generalization has to do with some of the advice you may (or may not) have gotten.  In medicine we tend to use lessons learned from one topic/matter in answering others.  For example, an instance of this has to do with IgM test results.  For many other viral infections the IgM is helpful in sorting out timing of infection and disease activity- that is clearly and incontrovertibly  not the case for HSV.  Thus there is a certain balance which needs to be considered in both advising and seeking advice about a situation such as yours which has so many atypical elements.  I say this not to cast aspersions on any of your multiple advisors or to cast doubt, just to acknowledge the need to be cautious in our approach to trying to help you in dealing with this perplexing situation.  EWH
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Avatar universal
Thank you for taking the time on your weekend to help me with this.   I did increase the Famvir initially when I was first infected to 500 3x a day.  It did not make a difference at that time, I had an outbreak when I started menses much to the disgust of the infectious disease specialist (it's okay I didn't tale it personally).  

My disease level might be less now.   However, insurance does not cover that dosage for 30 days.  Perhaps someday I'll try it again.  From my experience with this the Valtrex has an edge over Famvir unfortunately, I feel cognitively miserable on the it.  For the brief time I took the valtrex in high doses, it worked very well.  

Thank you for the clarification Dr. Hook.

Best Regards,
BlueSkies



I see your point Dr. Forthal was a doctor that specialized in CMV.  
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Avatar universal
I meant to delete the comment about Dr. Forthal but since it ended up on the thread I will clarify.  It's my understanding that he specialized in detecting antibodies in the blood and was known for his research with HIV and CMV.
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300980 tn?1194929400
MEDICAL PROFESSIONAL
One last comment.  Valacyclovir will become a generic medication in the not too distant future so when it does that may faciltiate the switch.  The other thing that might help is that acyclovir is currently available generically as well.  You may wish to this possibility with your doctor as well.  good luck.  EWH
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