Thoughts of one of the millions of genital herpes sufferers….

In my line of work, every now and then, I receive e-mails and letters from people with genital herpes.  This is the primary means by which I have come to gain some small,  limited appreciation of how HSV-2 infection and genital herpes affect people in ways that simply cannot be measured with an antibody titer, a PCR, or any other calipers that a scientist may have in their toolbox.

Below, I have copied (word-for-word) an e-mail I received from an anonymous individual seven years ago.  It forever changed how I looked at the problem of HSV-2 genital herpes, and made me realize that you have to think about this disease through the eyes of the individual to see its impact.  Looking at the HSV-2 genital herpes epidemic from 40,000 feet, as scientists are prone to do, is fine for understanding the epidemiology of HSV-2 spread.  However, such detached, sterile descriptions of the frequency of HSV-2 seropositive carriers simply does not lend itself to understanding why HSV-2 genital herpes is a big deal to people who carry the virus.

We possess the requisite knowledge and systems to deliver an effective HSV-2 vaccine to the human population.  E-mails such as the one below lead me to believe that it is time we did so.

– Bill Halford

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I recently read an online article about your research into a potential vaccine against the herpes virus.  I wanted to thank you for your efforts in this field and, beg you to continue.  Society seems to reflexively associate the virus with promiscuity.  But, as I am sure you are already aware, this is not always true.  Some, after their marriage ended as a result of the rigors of graduate school, find out that their wife carried the virus, but never told them.  Such news can be paralyzing.  And it’s not just the fear that no one will ever want them.  That is a selfish fear. It is the fear that one could inflict that same feeling of shame and anger in another; which, in turn, prevents them from entertaining the notion of dating and possibly marrying again.

The virus may not be life threatening, but the emotional effects are nevertheless malignant.  It is not always secreted away in some back alley or brothel.  Sometimes it teaches Sunday school and gives money to charities.  Sometimes it practices a profession and leads a very healthy lifestyle.  And while its host participates in these activities, it authors silent words of despair and loneliness.  It wages war against the best days and amplifies the worst.  I ask of you two things: first, that you would keep the origin of this email absolutely confidential; and secondly, that you not give up in your pursuit for a vaccine.  It does matter.  It is important.  And it could very well save lives, in every possible sense of the word.

-Anonymous



30 COMMENTS

  1. Hi Georgia, did you have this typed during culture? My bets are that it’s HSV1 vs HSV2 and that you somehow autoinnoculated. It’s pretty important to know the difference.

  2. Hi Bill
    The facts and opinions you have addressed to all of us is indeed such a great help. I am only at the age of 17 and I have been infected with genital herpes HSV-2, and have had my first severe outbreak. It was extremely painful, and I could not last a second of it. I was not sexually active at the time, I don’t even know how I contracted it. Can you just randomly get it? And I’ve been reading about the vaccine of small pox to reduce the outbreaks, is it true that it might help? Its really hard for me to still understand all of this and I’m just trying to get additional information for HSV-2 since I’m looking for options in order to help get ride or atleast fight off the infection for a while. What do you recommend I should do ? And is it normal for me to get bruises on my legs which I can’t walk properly and sore ankles due to when I get my outbreaks?

    • Hi Georgia,

      Have you visited an infectious disease specialist to confirm your diagnosis of HSV-2 and seek professional medical advice on the available treatments? I think this might be very helpful if you have not already done so. Going to a general practitioner (i.e., regular doctor) is a start, but for the symptoms you describe, I would consult with a doctor who specializes in infectious disease as this may be a long-term condition and more information can only help.

      – Bill H.

  3. Just an FYI. I was born in 1948. In 1954 (age 6) I started to get oral herpes outbreaks. By the time I was eleven (1959) outbreaks occurred every 3 months, lasted 4 to 6 weeks, and extended from my lips, throughout my mouth, and down into my throat. Outbreaks affected more tissue and lasted longer with each occurrence. Scabs welded my lips together, and I couldn’t swallow. I received intravenous feedings. A Dr. Carl Johnson in Chicago began giving me IM injections of smallpox vaccine in increasing dosages several times a month for a year. Since then, I had only one outbreak, and that was in 1972 (age 24) because I simply didn’t take good care of my general health. I am now 66, and I have not had an outbreak since then.

    • Hi Peter,

      Thanks for the interesting comment. I think there is considerable anecdotal evidence that a therapeutic vaccine to reduce the frequency and severity of HSV-1 and HSV-2 herpes outbreaks is feasible. In general, I would prefer to use a HSV-2-specific vaccine to achieve this goal in reducing the symptoms of HSV-2 outbreaks (and likewise would prefer a HSV-1-specific vaccine to reduce the symptoms of HSV-1 outbreaks), as I think a vaccine with the appropriate viral antigens would have a higher probability of success across a population of herpes sufferers. However, I am glad to hear that the smallpox vaccine reduced your frequency of HSV-1 oral herpes outbreaks, presumably by re-awakening your HSV-1-specific immune cells out of a non-responsive (anergic) state while the HSV-1 virus itself provided the correct antigens.

      I use to dismiss such claims because they do not neatly fit into a box of how we envision immune control of HSV-1 or HSV-2 working. However, the reality is that over time, I have probably heard or read case accounts from scores of people which are each completely different in the specific details, but which are similar to what you describe. That is, the generic pattern I note is that (1) People get a HSV-1 or HSV-2 infection and arrive at a steady-state (predictable) pattern of disease for better or worse (i.e., very few episodes of outbreaks, or outbreaks all the time that linger for too long); (2) a non-specific vaccine like smallpox (which is quite a harsh vaccine) or a traumatic illness like Lyme disease comes along; and (3) after the traumatic insult / stimulus to the immune system, they arrive at a new norm for how their body deals with HSV-1 or HSV-2 (e.g., outbreaks disappear or become very rare). A physician in the U.K. (Gordon Skinner) repeatedly reported similar effects against HSV-2 genital herpes with a variety of preparations including an inactivated HSV-2 vaccine in the 1980s and 1990s.

      We have no clear basis in immunological theory to explain how a therapeutic HSV-2 vaccine would work. However, in my opinion, there are too many reports suggesting a therapeutic HSV-1 or HSV-2 vaccine may reduce the suffering caused by recurrent herpetic disease to ignore this possibility.

      – Bill H.

  4. Is it possible that the vaccine could become a “functional cure” for those that already have the virus? I was, believe it or not, INTENTIONALY infected by another gay guy I picked up at a bar one night 13 years ago (he taunted me about it latter that month). Since, it has actually spread to my hand. I have what I call “low level” outbreaks from time to time that look like subtle rashes. I have heard that high school wrestlers sometimes get this under their fingernails (either HSV-1 or 2) and occasionally spread it to other wrestlers arms, hands back, etc. I am terrified that I could spread it to, for example, my friends children with just basic contact. Unfortunately suppressive therapy does not work for me. Do you have any thoughts on treatments that could protect other people in my life from catching this without my having to hide away from all contact with others. Creams, gels?? Functional cures???

    Thank you

  5. HI Corina, I suffer from almost constant low level irritation, not necesarily “prodrome” persay, but not normal either. I was swabbed positive for HSV1, but have been negative (out to a year) on the IgG and Western Blot. My uneducated “guess” on it is that the immune system has the antibody codes for other herpes family virus (chicken pox, Epstein Barr, etc) and rather than make new ones, uses what it has for the common proteins between the viruses. I believe the constant prodromes without outbreaks are adequate, but incomplete antibody function against the virus. Be aware that my take is simply a guess.

  6. Can you please explain the process of why some people have constant prodrome symptoms but no actual obs? Most people believe prodrome symptoms mean an ob is about to occur. But, Im sure millions of people suffer from prodrome symptoms only…

    • Hi Corina,

      I believe that the “constant prodrome symptoms” you describe are what I would consider a form of neuralgia; that is, (1) a sensation of pain, itching, or burning in the anogenital region that was infected with HSV-2, and (2) which is completely disproportionate to what you can see externally.

      I am no neuroscientist, but my best guess is that this chronic neuralgia (chronic prodrome) is caused by inflammation in the sacral ganglia coming off the lower backbone. This is where latent HSV-2 lives….in neurons of the peripheral nervous system, and typically in the sacral ganglia coming off the lower segments of the backbone.

      An important thing to remember is that the neurons that HSV-2 infects are sensory neurons. The primary cell body of these neurons is in the sacral ganglia, but they send long thin axons (like a fiber optic cable) out to the anogenital region of your body and into the spinal column (where the signals are relayed to your brain). When you are healthy, these sensory neurons only send signals (i.e., fire off like spark plugs) when there is a legitimate sensory input from the skin / epithelium in your anogenital region. A “legitimate input” that should cause neuron firing is touch, pressure, heat, pain, etc. I believe that in people with HSV-2, prodrome / neuralgia are what happen when cells of the immune system attack the infected neurons in the sacral ganglia. These attacks and inflammation in the ganglia cause the neurons to “misfire” in a way that is completely disproportionate to what is happening on the outside. Nonetheless, your brain tries to interpret these neuronal misfirings, and I believe that it interprets them as pain, itching, and burning that is disproportionate to what is happening on the surface. In many ways I believe that this is similar to the post-herpetic neuralgia that people experience after shingles, but is not nearly as intense and debilitating as what happens after shingles (i.e., a recurrence of VZV infection).

      Not sure how much of that makes sense. The bottom line is that (1) constant prodrome symptoms probably means that your immune response is good enough to prevent HSV-2 reactivation events from causing recurrent lesions, a process that takes at least 5 days, but (2) your immune response is not good enough to immediately suppress HSV-2 reactivation events and the immune response that happens 3 or 4 days later drives inflammation in your sacral ganglia, and thus neuronal misfiring that tells your brain something itches or burns down there.

      Please feel free to tell me which parts of this explanation don’t add up, as my explanation is based on 25% facts and 75% inference.

      – Bill

  7. HI Erica, to clarify I believe what he’s saying is that your body needs time to ramp up in creating antibodies and T-cells. If you take antivirals it disrupts the viral replication chain and your body quits making those antibodies. It still remembers how, but it doesn’t have to make them. Without antivirals at least some HSV virus is always active somewhere so your body is on top of it and ready. If you take Valtrex and let your body shut down its defenses it will take a bit of time to ramp up again, thus making you dependant on Valtrex.

  8. Dear Bill,
    I have had HSV-1 since I was 15 years old. I never really thought about it too much because I only got a single blister or two from it maybe once every 8 months or so, sometimes longer. But right before I turned 21 I had a little one in the corner of my mouth and didn’t realize it. I put chapstick on before going to bed and woke up with tiny blisters literally covering my top and bottom lip. Ever since then I would get outbreaks that were in clusters all over my lips, I never had the single blister anymore, it was 10 times worse. Then frequency started changing. It went from once in a blue moon to once every few months. By the time I turned 22 I started looking into supplements to help with suppression, like L-Lysine. I took the Lysine but not religiously and if I got an outbreak I would get Valtrex. I had outbreaks so badly that it would spread to my chin, nose, and once it even was around my eyes! And when i turned 23? fooooorrggettt about it! I had to start taking 500mg of Valtrex once daily as a preventative. If I missed ONE day I would get a bad outbreak. I’m 25 now and have no change, its still just as bad. And now every now and then, if I forget to take the Valtrex first thing in the morning and wait until 4pm I may get one, or even if I dont miss a day it’s been happening occasionally.
    I have racked my brain, spent an ungodly amount of time desperately researching online about what can be done for prevention. I take multivitamins, B vitamins, D vitamins, Folic Acid, Selenium, 1500mg (sometimes 2000mg) of L-Lysine a day plus my Valtrex, I also have a list of L-Arginie vs L-Lysine ratios in foods so I’ve cut the worst ones out like nuts & grapes and always refer to this list if I’m unsure.
    Now I’m on a whole new level of desperate. I’m attempting to go gluten free in hopes that that is what is causing my stress, as I know stress can cause a greater frequency. And I also spent time getting blood tests run when I went to see a doctor 2 years ago because I was feeling depressed and tired all of the time and mentioned the