Herpes fear

[new2this234]

Dear Dr. Handsfield and Dr. Hook,

I submitted a question to Dr. Handsfield's private e-mail only because it was too long to fit here.  I sent the e-mail on Feb. 8, 2011 at 10:10 PST. I would be eternally grateful if you could reference it there. I know you do not want to encourage this, and any follow-up would be done here.  For the benefit of everyone here, I am a 48-year old woman who was recently diagnosed with Herpes II, genitally, though I believe I have had this most my adult life. A new partner required the testing, and ended the relationship after my results.  I am sure I would have lived the rest of my life without knowing I had Herpes if I had not been tested under these circumstances. My questions were what would be my risk of transmitting this to a partner with my having had Herpes a minimum of 15 and probably 24 yrs, with my taking daily Valtrex and with avoiding sex during obvious outbreaks? (No condoms and assuming a circumcised male).  What problems can a man expect if he does contract this from me.  Even what's unlikely, since that's what the fear will be.  Will the Valtrex relieve symptoms if a partner gets a nasty case? And who can I send a partner to for one on one medical advice.  This forum is, of course, wonderful but I thought someone might want a personal consultation.  Family doctors often do not know about this or have patently wrong information. I just came from my urologist today (on another matter), spoke to him about this and he told me he would walk away.  That's what he would do and that's what most anyone in that situation would do. He did say he would not require blood testing of a new partner, however! And so I guess I would be rejected now that I know and would disclose the information, but I would not have been when I was sure I did not have it. I don't want to recommend a potential partner to speak to his doctor after having spoken to mine today. -- Thanks

[Edward W Hook, MD]

Glad I can help. This will be the final answer to this thread however.

Your risk will be low even if you do not use condom but take the other precautions against transmission that have been discussed above.  The effects of each precaution is additive.  You already know that playing this numbers game is a bit silly.  After all, whether chances are 1% or 0.1%, if your the one it really doesn't matter.  The key here is to take precautions, incluing disclosure to your future partners.  

It is now time for this threa to end. Take care.  EWH

[new2this234]

Dr Hook, THANK YOU,

You have answered my questions very well. I wanted TO-THE-POINT answers-- sorry my questions got so involved. And I am OFF THE INTERNET. I think I've probably got about all the information I'm ever going to need about this-- for myself or someone else.

About my ex, he plans to require herpes testing with documented negative results before he will ever enter a sexual relationship again. And so I guess his risk will not be higher in dating others-- if he can follow through with that. At least at the end of our relationship he finally admitted to me that he had a phobia. I need to be stronger in that this should have been obvious to me, certainly! It is unfortunate, but there is nothing I can do about it.

I have ONE REMAINING QUESTION:  It's about my risk. I have no problems with using condoms at the beginning of a relationship. It's safe for other concerns as well. But I don't want to use them permanently if I'm lucky enough to establish a permanent monogamous relationship in the future. I understand my risk for transmission is less than 1% on average with all the preventive measures we've discussed. Am I right that the risk for me is still about 1% or very close to it, on average, minus the condoms but with all other precautions (including daily suppressive therapy) still in place? That's my understanding from reading posts here pertaining to others.

Thank you, Dr. Hook. You have helped me tremendously. Goodbye.

[Edward W Hook, MD]

The questions you are asking at this time are nuanced an beyond the scope to this Forum which is designed to provide clients with direction and brief insights into next steps in dealing with STs and STD risk.  I understand that your recent diagnosis, and perhaps more importantly, your interactions with your ex and others have been traumatic and are representative of the unwarranted stigma cast upon HSV an other STDs in the U.S.  I will try to provide brief answers to the questions you ask but you really need to take them to a health care professional with a knowledge of HSV and whom you trust. Further, I would urge you to stay off the internet- many sites provide more misinformation than fact.

With that, brief, partial answers to your questions:
1.  Herpes is manageable in immunosuppressed persons and the existence of HSV does not make other illnesses worse.  Different people have different factors which they associate with HSV-1 recurrence- you have mentioned some of them.  There are no clearly describe "triggers" to HSV-2 recurrences.

2.  Your ex is, once again, incorrect. There is no evidence that sex triggers HSV recurrences.

3.  Until you had your recurrence, I would not have recommended testing.  I would have called your ex unnecessarily paranoid then, and now.

4.  Your ex is, again, wrong. Lots of people have sex and therefore HSV is transmitted fairly frequently.  Your ex's risk will be far higher as he dates new persons who do not know whether they have HSV than if he stuck with you and used the precautions you mention which, in your case would reduce the risk for transmission of infection dramatically, certainly to less than 1% on average.

Hope this helps.  Take care. EWH

[new2this234]

Thank you Dr. Hook. These are the remaining concerns I have. Could you please address each of these:

1) About the immune system: You have told me what the research assistant at the UW Virology Clinic phone line said. It's good to know they are a good resource. It's not just the people I've spoken to, though; I think the internet is full of (apparently wrong) information about herpes and the immune system. To reiterate, a very weakened immune system may make herpes slightly worse, but even then, manageably so. But herpes will not damage ones health or give someone a chance of a worse outcome with other conditions even when a person is very ill, right? And as far as causing more problems with the herpes, we're talking about "very immunosuppresed" people, right? What about just getting run down, not enough sleep, sick with colds, etc? I read Dr. Handsfield write that while herpes I outbreaks is associated with trauma to the area, especially sunburn, currently no environmental factors are thought to lead to increased outbreaks of herpes II. Is that right? If nothing is yet proven by research, have you seen anything that makes you suspect a causal relationship?

2) This is a sub-question to Q.1, above. You have read my previous posts. I had sex with my new partner after not having had sex (any sexual activity of any kind) for more than 14 years. He became extremely anxious about herpes and sent me home with instructions to be tested. The very day after getting home and four days after sex, I noticed very slight discomfort that-- we know now-- was a herpes outbreak. My ex told me he read that "physical manipulation of the area" (sex) can lead to outbreaks. He told me he did not believe it was a coincidence that I had an outbreak after sex. (It is a bizarre coincidence to me). Please, doc, tell me if you believe there is a connection? I do not want to feel like a leper, like I will be especially infectious during sex or after every act of intercourse. Looking back, when I know now that I must have had the infection, I never had a problem with any soreness after intercourse, let alone after each act. I would have noticed that-- put that together, and sought medical attention. I think I have taken good care of my health and always been attentive. (BTW doc, I ask all of this only for benefit of a future partner. I am not a hypochondriac and have no concerns about any of this for myself. Like I've said, I find all of this so ridiculous...).

3) You responded to another individual here within the last few days where you wrote that you do not recommend that person be tested for herpes stating, "you have no reason for testing" which begs the question, "when should a person be tested?" I know, doc, it is water under the bridge, but I want to know. You have read my previous posts and I think have all the information you need. I had always been tested, saying "run everything," in the past, following the end of relationships. Indeed with the long list of diseases my ex had me get tested for, everything came back negative except this. Did I have a reason to be tested (a part from a partner who insisted on it due to his own irrational fears) and what are the reasons? I don't know how recently you may have addressed this elsewhere, but I'm sure others would like to know as well. If the answer is some people (with a sexual history) don't have a reason to be tested and we know that 1 in 4 people have it, just what is that saying about the (knowledgeable) medical communities concern about prevention of the transmission of this?  

4) You have avoided giving a numerical value to my particular risk for spreading this to another. I know you cannot guarantee transmission will not occur. However, from reading previous posts from Dr. Handsfield, am I correct in believing that with telling partners, correctly taking Valtrex daily, abstaining during known or suspected outbreaks, and with having been infected more than 14 years ago, my risk for spreading this to another would be somewhere in the range of 1% a year, maybe less? Combining the above with consistent, correct condom usage being close to 100% protective? I ask this in part because my ex did not believe this. He said that if you're with someone that has it "eventually you get it." He did not believe the risk was as low as I said given that 1 in 4 people are infected. That does seem strange, but am I correct in understanding it this way: 1in 4 is the number for the incidence in the population and has nothing to do with risk? Isn't it true that the numbers for risk may be much higher than that or much lower depending on many factors such as those I've mentioned above? Isn't the risk therefore much less with me, assuming the conditions I've outlined above, than with the average person who has never been tested?

I hope that should do it. I can't thank you enough for your time. I'm having an extremely difficult time with this, but I also can't believe my good fortune at getting to speak with experts of the caliber of you and Dr. Handsfield about this matter. I know there is no one else anywhere who knows more about this than the two of you. I have heard what you have said to me, and I know what your qualifications are, and I have heard the almost unbelievably ignorant and almost intentionally cruel, if not intentionally cruel, comments of others, and I know what their qualifications are. I'm eventually going to have to take that and move forward.

Thank you very, very much.

[Edward W Hook, MD]

  I suggest you bring up some of these concerns on the MedHelp Herpes Community site.  I am confident that you will find many supportive and helpful voices there.  The folks who participate are great.

Your ex and friend's sister are mis-informed.  Occasionally but not commonly, if persons are very immunosuppressed HSV can recur more often or outbreaks can become somewhat more severe but not catastrophically so.  If this happens, therapy with medications such as acyclovir are highly efficacious and typically take care of the problem.

HSV doe not cause chronic urinary problems of the sort your mis-informed friends have spoken of.  Again, occasionally and primarily in women, a first episode can cause discomfort or even urinary retention.  This however is are and again can readily be managed.

You have heard from a lot of sadly mis-informed people.

[new2this234]

Thank you, Dr. Hook-- especially for telling me that you are so sorry for this. I need to hear kind words. I was tested in August and yesterday was my first Dr. appt.- for anything- since then. I thought a urologist would be a good choice for a potential partner to speak with. I have learned that I cannot go to others indiscriminately for support about this. Like I said, he told me that he would walk away in this situation and that that is what most anyone else would do as well. I can't believe he could say that to me, even if he felt that way, as apparently he did!!! I tried to give him some info I acquired here, and he said "what if I was one of the people who got it with symptoms and I got a breakout every month and couldn't go to work?" I now feel so damned violated over that! Now I've got that stuck in my head. To think I begged my ex to speak with his urologist! My (male) family doctor who took the culture and told me it was probably herpes at that time, said he did not know if he would continue a relationship or not. And you know how my cardiologist ex handled the matter. If this is what three male physicians think, what am I going to find out there? I try to tell myself I wouldn't want someone like this if I had it or not. I don't know. I don't know how I'm going to "settle" this in myself. I know I could always choose not to disclose. That is not my choice and not something that I will do. I couldn't handle it. I do not see that as a mark of any particular character strength in me, however. More a weakness. I do not see spewing out garbage onto another and not carrying it oneself as always the right thing to do. I just can't believe how stupid this all is. Isn't the risk of being with me on Valtrex, even without condoms (once in a committed monogamous relationship), somewhere around 1%? Isn't that many, many times less than the risk of just "being out there?" My urologist had no problem with that. He said he would speak with partners about STDs but would not require testing (at least before our conversation) as my ex had done. That's what we all do- and that's how you get it!    

I am sorry to vent. Two specifics. Both my ex and a friend's R.N. sister said that while genital herpes is usually not a serious threat to one's health, it can be very serious if a person's immune system becomes damaged from, e.g., lupus or cancer. I was told at the UW Virology Clinic phone line that that is not so. Can you comment? Did this used to be widely believed as I've heard it now from two members of the medical community?  

Have you seen any cases of genital herpes in a male that involved painful lesions inside the urethra and made urination extremely painful or impossible?

You provide a wonderful service to educate the public. I wish you could try to do something to help educate your fellow medical professionals.  

Thank you again.

[Edward W Hook, MD]

Welcome to our Forum.  Dr, Handsfield will most probably deleted your e-mail to his personal e-mail, as I would probably do as well.  There are both rules which lead us to this, as well as the fact that many of the clients on this site believe that their circumstances are sufficiently unique to warrant communications outside the site.  Further, we both believe that others in similar situations will benefit from reading your posts and our replies.

I did review your earlier interaction with Grace in the community site.  Your ex sounds to have severely over reacted.  I'm so sorry for this- his reaction is inappropriate.  Genital herpes is not some excruciatingly painful plague acquired as divine punishment for misdeeds.  It is an unfortunate problem which can be managed with few, if any major consequences among infected persons.  As you probably already know, at present about 25% of American adults have genital herpes and, indicating that the infection is not even severe enough to be obvious among many who become infected, over 80% of infected persons are unaware of their infections, as you were until you happened to get tested.  

Herpes is not particularly efficiently transmitted.  Most exposures to infected persons o not lead to infection, even if lesions are present and there are a number of things which can be done to reduce risk for transmission further.  These include avoidance of sex during recurrences (you have had a recurrence so you now know what to look for- future recurrences should follow a similar pattern), tell partners about your infection, use condoms and consider regular (daily) suppressive therapy with an antiviral agent such as valacyclovir.  Each of these steps has been shown in scientific studies to significantly reduce risk for transmission of infection and combine, they reduce  the already relatively low risk for infection even more.  

In answer to your specific questions, it does appear the frequency of HSV recurrences and asymptomatic shedding of the virus decline slowly after initial infection so that if indeed your original infection occurred 10, 15 or more years ago your rates of recurrence and shedding are lower than they were years ago.  

Were a future partner to get HSV, antiviral therapy is highly effective in promoting healing, reducing discomfort and preventing recurrences.

As to where persons might get information, in each city there are typically informed clinicians who can be seen in consultation, the challenge is finding them.  My advice about how to go about this is to access the , highly informative information available at the web site run by the American Social Health Association of on the MedHelp STD or Herpes Community sites.  (Disclosure. Dr. Handsfield and I are both members of the American Social Health Association Board of Directors.)

I hope these comments are helpful.  EWH