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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
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
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
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
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
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
A related discussion, sex between 2 people with HSV2 genital was started.
A related discussion, HSV2 and Nerve Pain was started.
Thank you for the reply Dr. Hook.
MEDICAL PROFESSIONAL
They do not. while it is probable that the virus does replicate almost continually at a low level in almost everyone with HSV, there is no data to suggest that this replication causes continuuing symptoms. If it does, the symptoms should resolve with antiviral therapy which does halt viral relication.
This formally concludes this thread. There will be no further answers. I wish you well. EWH
This formally concludes this thread. There will be no further answers. I wish you well. EWH
Okay - thank you. Can you answer from your research if people can possibly feel viral activity on a daily basis?
MEDICAL PROFESSIONAL
Yes please although I must admit, I doubt I have much more to add. Your symptoms are complex and are unlike symptoms of others with HSV. An important question remains whether they are due to HSV or some other cause. Questions of this sort are beyond the realm of what can be provided over an internet site and are best address through face-to-face interactions with a health care prodvider. EWH
Dr, Hook,
Should I start a new thread?
Should I start a new thread?
Dr. Hook,
This past Friday I saw a neurologist. He ran a nerve conduction test and an emg muscle test both were normal. We will meet in 2 weeks to discuss the results of my blood test.
The itching tonight is really bothering me. Only in the outer labia and rectal area. I'm somewhat miserable :( I read that the virus is ALWAYS active in your body - it maintains a constant level of activity. Could this be the reason for my daily symptoms? How does this relate to viral latency? Based on your research is this something a person would feel - this constant state of activity?
Thanks
BlueSkies
This past Friday I saw a neurologist. He ran a nerve conduction test and an emg muscle test both were normal. We will meet in 2 weeks to discuss the results of my blood test.
The itching tonight is really bothering me. Only in the outer labia and rectal area. I'm somewhat miserable :( I read that the virus is ALWAYS active in your body - it maintains a constant level of activity. Could this be the reason for my daily symptoms? How does this relate to viral latency? Based on your research is this something a person would feel - this constant state of activity?
Thanks
BlueSkies
I cannot take the acyclovir or valtrex during the day Dr. Hook. I was very ill on that medication and came close to losing my job right after I was infected. In my early research valtrex was considered the "cadillac drug" and I got stuck thinking the acyclovir or valrex was my plight - regardless of how cognitively ill I felt on it. The famvir is not pushed for herpes by physicians and pharmacists.
It was a rough time because I had SEVERE itching and I just wanted some relief from it. That was when I sought out Dr. Forthal. Not one of my shining moments - I was itching so bad in that outer labia area I kept inspecting it and saw these little bumps. I thought they were herpes.
Now I have never had a blister on my mouth or anywhere else so I was very naive as to what herpes looks like. Dr. Forthal referred me back to my GYN who could not diagnose the microscopic bumps -which seems so ridiculous now. I underwent two very painful vaginal punch biopsies. The biopsies were normal and the cause of the severe itching was never discovered. It has calmed down though as the virus calms down.
When my disease level decreases I will consider 500mg of valtrex at night. 1gram makes me feel hung over the next day. Valtrex is a very good drug but for me there are many side effects. I do not have any side effects on Famvir.
There - now you know my life story '-) I sued the man I contracted this virus from and we settled out of court. This was a serious life changing event for me and I have been through hell. Lying about your character and your H status is unacceptable. People have the right to sue and they do.
Thanks for listening :)
BlueSkies
It was a rough time because I had SEVERE itching and I just wanted some relief from it. That was when I sought out Dr. Forthal. Not one of my shining moments - I was itching so bad in that outer labia area I kept inspecting it and saw these little bumps. I thought they were herpes.
Now I have never had a blister on my mouth or anywhere else so I was very naive as to what herpes looks like. Dr. Forthal referred me back to my GYN who could not diagnose the microscopic bumps -which seems so ridiculous now. I underwent two very painful vaginal punch biopsies. The biopsies were normal and the cause of the severe itching was never discovered. It has calmed down though as the virus calms down.
When my disease level decreases I will consider 500mg of valtrex at night. 1gram makes me feel hung over the next day. Valtrex is a very good drug but for me there are many side effects. I do not have any side effects on Famvir.
There - now you know my life story '-) I sued the man I contracted this virus from and we settled out of court. This was a serious life changing event for me and I have been through hell. Lying about your character and your H status is unacceptable. People have the right to sue and they do.
Thanks for listening :)
BlueSkies
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
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.
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.
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.
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
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
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.
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.
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
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
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
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
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 :(
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 :(
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
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
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
That's an interesting comment "genitally focused". That's definitely not the problem that I know FOR SURE. I've covered that area, thanks.
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.
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
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
You are reading content posted in the STDs Forum
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.
