Herpes Nation Newsletter Volume One, Edition Two

Why I am not Ashamed of Having Herpes!

Why should I be?

I will not allow myself to be ridiculed, stigmatized or disrespected by others for having a disease. Disease is a natural part of life whether you are human, animal or plant. Nobody is exempt from disease, almost no one will live their full life without getting at least one sexually transmitted disease. These are the facts.

Some people are afraid of diseases and those who have them. That is an ancient, primal fear, and one I understand well, but it doesn’t excuse anyone from mean-spirited, ignorant behaviour towards those with diseases.

When I was a kid we made fun of “retarded” and “handicapped” people. I am deeply ashamed of that now, but children can be quite brutal. Adults need to hold themselves to a much higher standard.

Those who make sick jokes about herpes are not only aping the same mentality as those who make racist or sexist jokes, but they are also exposing their own lack of courage. It’s much easier to ridicule the things you are afraid of rather than having the courage to face those fears. They are creating a stigma that causes millions of people with herpes unnecessary grief.

At least 60% of the population has herpes above or below the waist. 70% of the population will get HPV as genital warts or cervical dysplasia. 80% will get chlamydia at least once- most women will get it more than once.

All animals with backbones get herpes including cats, horses, elephants and salmon. Most animals without a backbone get herpes including worms.

Having herpes doesn’t make me less moral, less attractive, less ethical, less worthy of respect, less sexy or less of a great catch, so why would I be ashamed to have herpes?

I am not afraid of my body. I know that sometimes I will get sick. I know that my faculties will decline as I age and that I am destined to die. This is the beauty of life- the contrast and balance between health and disease, between happiness and sorrow, summer and winter, fullness and emptiness, life and death.

I am a natural person; I am not ashamed or at war with any part of my body, including the herpes virus. I am at peace with the virus, my body and my place in this world as a person with a lifelong herpes infection.

I am most definitely not ashamed.

Join Us

Please join me and the people already contributing to this newsletter by sharing your stories and articles. If you paint or draw or make art of any kind, express your feelings about herpes through your art and send it to us to share with the Herpes Nation. If you are a musician send us your herpes songs. Send your recipes. Empower yourself to sign your work, or use a pseudonym to protect your privacy. Either way, don’t be shy! We want to hear your voice.

Regards and love,

Christopher Scipio
Holistic Viral Specialist

An Interview with Dr. David Koelle

by Angie Richardson

What are your thoughts on the origin of the herpes virus?

Herpes has been with us for several hundred million years. It has evolved with us, it has changed with us. The herpes hosts have changed and evolved over the millions of years, and the herpes virus is no different.

What are the genetic differences and similarities between type 1 and type 2?

Overall, herpes type 1 and type 2 are 50 percent identical. Some portions are 95 percent related, and other portions are 20 percent related. They are very similar on a global level. Whether herpes will present itself orally or on the genitals depends on which place the virus likes better, which place is better suited for the virus. Herpes type 1 and type 2 are extremely related, though not as closely as the flu strands, which are 95 or 98 percent related. In terms of relation, we could consider type 1 and type 2 to be brothers, and chicken pox a cousin.

Why has herpes been such a successful virus?

Simply put, because it is clinically mild. The overwhelming majority of its hosts have no increased mortality. This virus is lifelong, and can be transmitted again and again throughout the lifespan of its host. Herpes’ infectious forms are periodically present on a highly transmittable surface (lips when kissing, genitals when having sex, etc).

Why has it been so challenging to find cures for herpes and other viruses, such as chicken pox and epstein-barr?

This is because of the latent property of the virus. The virus goes into the neurons, and stays for the entire life of the cell. The cell itself would need to be killed in order to successfully remove the virus. No drugs can go into these cells and take the virus out. There are 8 different types of herpes that infect humans, and all 8 have the property of latency.

How have viruses impacted human evolution? Since viruses are neither alive or dead, what evolutionary and ecosystem niche do they occupy?

Viruses help speed up evolution, they help to stir up the DNA, to create more mutations and to allow for more transfer of DNA. Retroviruses (not herpes) have contributed to evolution in a positive way, they make DNA mobile. They can move DNA laterally from one person to another. In fact, 20 percent of our DNA is made up of old retroviruses. Retroviruses copy and paste themselves into our DNA, they insert into our chromosomes.

Which came first, type 1 or type 2 herpes?

There is no way to be sure. The share a common ancestor. If one looks at two brothers and asks which came first, the question does not really make sense: they both came from common ancestor. One did not differentiate or evolve into the other.

What is the prospect for new types of the herpes virus evolving?

Imperceptibly slow. As evolution continues, people will slowly begin to look different, just as herpes will slowly begin to look different. It will happen so slowly over time that we wont even be able to notice it. Its not like the flu, where a new from of it will show up in another country. When herpes replicates, the accuracy of its replication is extremely high. It doesnt mutate on a time scale that is easy for us to perceive from our human lifespan scale. The likelihood of it mutating or evolving while we are alive is almost zero.

On the Path
by Jessica Lauryn

Why? Why is this so hard for me to write about something I’ve been so open about, yet so troubled by, for over a year now? Herpes. That insidious cellular parasite that crept into the nerve ganglia of my sacral cells. Sacral. Sacrum. Sacred?

The quote I remember most from Tom Robbin’s “Even Cowgirls Get the Blues,” was, “I believe in everything. Nothing is sacred. I believe in nothing. Everything is sacred.”

In the past seven years, I have grown closer and closer to believing in the sacred nature of my vulva, my vagina, my breasts, my womb, my clit. I study myself in the mirror. Breasts beginning to sag, their firm, supple nature a relic of a past body, a body that had yet to mother. They are now reminders of the suckling of two tender infants and toddlers, nourished by their goodness during their formative years. My breasts, heavy on my belly, have served their primary purpose. A job well done.

My belly, stretched to its skin’s very limits, is defined by pale scars, soft depressions reminiscent of tree roots. It protrudes a soft mound of loosened flesh reminding me of its emptiness, void of the life it once had the divine privilege of manifesting.

My vagina, in all its pains and glories, sheds the blood of my womb each month with the moon to remind me of my sacred role as a woman, creator of new life. My vulva, sweet mound I hold so dear, home to the holy bundle of glorious nerve endings, all of which I had no words for until post-pubescence. All of the sweet, mysterious sensations that I felt while secretly pleasuring myself as a young child were accompanied by a predominating sense of guilt and fear. There were years of disdain for my vulva. How it looked (when I was brave enough to examine it,) how it felt, when I was finally overcome by desire enough to touch it, and most importantly, how I thought I was supposed to feel about having one.

A little girl learns that the pains of childbirth are akin to torture. It filled me with a fear most morose. Menstruation. . .”the curse.” I felt condemned to a life of inconvenience, monthly pains, and a dirtiness I was required to hide to avoid embarrassment. Shame. There was no mention in sex-ed of female masturbation, but plenty of information about erections and “wet dreams.” I had no language to describe my own experience. I lived with the guilt and anxiety that I was somehow “hurting myself.” I lived in fear of the inevitability of the pain that would accompany my first penetration and the new realization that virgin or whore, there lay the same degradation.

And now, seven years into my own personal sexual revolution, having finally freed myself of the guilt I harbored for so long for being so sexually alive and curious from such an early age, I must choose to transform my relationship with my herpes virus.

Herpes. Oh, herpes. Why must you attack that which I love and pride so much, so violently? Why do you send little shoots of pain, panic, neurotic, spasmodic, low voltage shocks directly through the path that brings me ecstasy? Why do you birth and multiply in my wetness that I once reserved for myself and my lovers? Why do you rob me of my of energy and insist in keeping me away from the goodness of the sunlight? Why do you make me cry? Again, and again?

In this moment, I can feel the lymph nodes in my groin begin to swell, trying to protect me from another attack. In my mind, I imagine the beauty of my lover, sending currents of pleasure rushing to my clitoris. I hesitate to engage it. To quell it. To LOVE it. It seems my vagina is plagued and confused by your all too frequent reappearances and sudden disappearances. Can I not grow to understand you better so that I can once again reclaim the purity and the goodness of my sexuality?

Today, you make me so sad. You make me wish I would have never trusted my former lover who passed you on to me. But what good is dwelling on regret? This image, branded somehow into my psyche of a single, suspicious, small wound on the tip of a flaccid penis. The lovemaking was over when I noticed you. The damage already done.

Ten days later, my genitals had not experienced such burning and misery since the crowning of childbirth. And when the diagnosis was confirmed all I could think of was, “No! No! No! Please, no! Not that! Anything but that! There is no cure! It will never go away!” Such a loss I am feeling. A loss of my sexual health, and my sexual freedom, an essential part of my being.

I trust that my body, this body who has birthed and re-birthed itself, will in time learn to better accommodate this virus so that it will lie asleep, contentedly asleep. I want to love again. I want to fuck again. I want to be relieved of any shame that I carry for having contracted this disease. I want to enjoy my own body without the fear of an orgasm disrupting the nerve endings and causing me more grief. I want to be understood and accepted. I want to be humbled by the reality of the vulnerability of the human body without wallowing in self-pity and remorse.

If I were to believe in everything, and that nothing is sacred. . .then I am one with all the is good and bountiful and beautiful as well as all that is dark and scarce and subject to pain and suffering. If I were to believe in nothing, and that everything is sacred. . . then I fully embrace the same paradox that is life with the possibility of finding something sacred, something true and something to be grateful for. . .in Everything.

Profile of a Dater by Karen Weiner

When you read my profile you may not want to date, but I’d rather tell this to you now before it gets too late!
I hope you’ll have the patience to listen to what I say, because this is a scenario that happens every day.

What follows is a story about 3 women and a guy. (Now that got your attention – if it didn’t…then you lie!)

Mr Lucky Dater goes on a date with “one”, and they have a great evening full of laughter and of fun. But she tells him she has HSV and he is quite dismayed. So of course he does a runner and she feels a bit betrayed.

So onto number “two” he moves, and she is *squeaky clean*…of course as far as she’s aware, clean she’s always been!

But like so many people here she has the virus too. The problem is she cannot see it, yet it can spread to you!!

They share many nights of passion, but this comes to an end. Lucky for Mr Dater, number “three” is around the bend.

Number “three” is a wonderful gal, and they date for quite some time…but sex is on the horizon (as it is in any good rhyme)!

She isn’t sure what to tell him before they get too ‘wild’. She had a coldsore as a kid, but now it’s really mild.

She decides it’s not a problem and they spend the night in bed. She still avoids the issue and decides to give him h**d!

But like all his romances so far, this one too must end…and now our Mr Dater is back looking for a “friend”.

And when he finds the next one, and she asks if he’s been tested, he’ll say “Oh not to worry, I would know if I’m infected”!

And when she says “well that’s too bad ’cause I have HSV”, he’ll turn around and run right back to number “two” or “three”!!!!

So am I woman number “one”, number “two” or number “three”?

And are you absolutely sure YOU don’t have HSV?

A Recipe for Herpes Health

Being healthy and outbreak-free need not mean deprivation. In each edition of this newsletter we will be sharing recipes for a deliciously holistic herpes diet. Have you got a particularly good healthy recipe? Send it to us, and we will publish it!

Baba Ghanoush’s Herpes-Friendly Cousin
by Beki Rosenthal
Choose local organic ingredients as much as possible.

1 lg eggplant
1/4 cup whole plain yogurt
1 tbsp tahini
2-3 cloves garlic
1/2 small onion, chopped fine
1-2 lemons, juice and pulp
3 tbsp chopped cilantro or parsley
1/2 tbsp extra-virgin olive oil
1-2 tbsp hemp seeds
dash cumin and coriander (optional)
dash hot pepper (optional)
dash salt & pepper (optional)
dash cinnamon (optional)

1. Cut eggplant in 1/2 lengthwise.
2. Put cut side down in roasting pan.
3. Bake 30 min @ 375° or until soft.
4. Transfer to plate to cool.
5. Spoon out cooled eggplant flesh onto cutting surface and mince.
6. Put in bowl and mix with other ingredients.
7. Adjust seasonings to taste.
8. Dip with cut veggies or baked chips.

An Interview with Alix Bacon, Sex Educator

By Angie Richardson

What advice do you give your clients and the general public regarding safer sexuality, and the testing and prevention of herpes?

I caution them to assume that everyone has herpes (themselves included unless they have a Western Blot test proving otherwise). Based on this assumption, I recommend that people use condoms and dams for each act of sex for the duration of all their relationships. I think knowing your herpes status is valuable so if they can afford a Western Blot test I recommend it. That being said, even if you have a positive result you still may not be able to recognize an outbreak if one were to happen. Therefore I encourage them to really tune into their bodies and specifically, their genitals. Have a good feel and a good look in the shower once a week. For males this is easily incorporated into their weekly testicular self exams. Pay attention to “pimples”, “razor burn”, lymph nodes etc. Become familiar enough that you will notice if something is different.

Why do you feel there is still such a false stigmata toward herpes?

a) Herpes is the one common STI that you can’t get rid of. The only other life long STIs are HIV and sometimes HEP. HIV and HEP have their own stigma- the common misconception is that only IDUs and sex trade workers are infected. Therefore for Jo Schmo herpes is viewed as the only incurable STI. Chlamydia, Gonorrhea and Syphillis are all cured with a course of antibiotics, HPV and molluscum contagiosum are transient infections (ie our immune systems will deal with them within 2 years) with cosmetic treatment options but herpes is with you for life.
b) People don’t realize how common herpes is (1/5 adults in North America have genital herpes).
c) Herpes is associated with infidelity.
d) People don’t understand how to prevent herpes, or don’t want the “hassle” of using condoms.

How do you feel you are making a difference in the public’s perception of herpes?

I have a holistic approach to herpes. I acknowledge the fear of living with and disclosing herpes while at the same time taking a clear, scientific approach to sharing information. I strive to demonstrate that physically (and dare I say socially) herpes usually doesn’t have to be a big deal. We can not separate the physiological and emotion aspects of our sexuality- they must be addressed as a package. I feel this is a significant departure from previous, failed education attempts. These include employing scare tactics, dispensing misinformation and shaming.

Why is it so difficult to get herpes tests?

Herpes testing options are confusing, individual tests can be expensive, tests have significant limitations and accessibility is poor.
There are 3 ways to test for herpes.

The free blood test looks for antibodies, which can take up to 12 weeks to develop. 80% of people test positive for this test (because that’s how many people have been exposed to HSV 1- which is usually what causes cold sores), and it does not distinguish between type 1 & type 2. It will not tell you if you have had or ever will have an outbreak.

The second blood test is the western blot. This is the gold standard of herpes blood tests & it will confirm for you whether or not you are a carrier and if so, whether you have type 1 or 2. Some people will have an accurate result after 2 weeks, but some may require up to 12 weeks after exposure before they will get an accurate result. It will not tell you if you have had or ever will have an outbreak.

To get a western blot you must request it by name from a doctor, who will write a lab requisition for you. You take the requisition to St. Paul’s hospital on Burrard St. in Vancouver, where you will have to pay approx $120 for the test.

The 3rd test is a swab of a suspicious bump, rash, fissure etc. This is a viral culture & is the only test that will confirm for i)if you have herpes ii)what type iii) what an outbreak looks & feels like & where you can expect them to appear in the future. Unfortunately, the culture is only accurate in the first 24 hours after the outbreak begins, so its best to go in as soon as possible when symptoms appear.

Why aren’t medical professionals encouraging people to get herpes tests?

I can’t speak for a body of medical professions but I suspect its a combination of things.
a) herpes is so prevalent and has so few physiological side effects that it isn’t financially sensible to test
b) they understand the limitations of the tests
c) they feel confident they can diagnose based on a visual examination and anecdotal description of symptoms
d) GPs have to stay on top of so many things, are overworked and underpaid and they can’t possibly stay on top of everything. STIs are only covered in brief in medical school and while continuing education is required doctors choose which areas they wish to further explore.

Doctors often treat herpes like its not big deal. This may be in an attempt to destigmatize the virus, or perhaps it is because they are jaded by its prevalence. This attitude, combined with a lack of information, lack of time and lack of appropriate sensitivity training result often result in health care providers failing to give clients all the information they need on how to prevent transmission and how to communicate with their partners about STIs. They also fail to provide the counseling, emotional support and validation necessary for a newly diagnosed client to be able to really hear information on transmission and communication.

Why is their such a temptation for people who get herpes above the waist to either act like they don’t have herpes at all or at least be more complacent about disclosure and safer sexuality?

Many people do not realize that cold sores are caused by the herpes virus. They also do not realize that they can spread it from the mouth to the genitals. This is aggravated by the fact that transmission of oral herpes is often not sexual and therefore it is not framed as an STI. And of course, there is the herpes stigma!

What more can be done to educate youth and seniors better about herpes?

Schools need to develop curriculum requirements for comprehensive sexual health education and they need to create a system to ensure the curriculum requirements are being fulfilled. Youth clinics need to proliferate and become more accessible. In the meantime (since holding our breath isn’t going to help) there are fantastic new forays into using technology as a tool for sex education. Facebook and mySpace pages, blogs, comic books, SNL style skits that the Midwest Teen Sex Show (http://midwestteensexshow.com/). These sassy for-youth-by-youth provide a social context for sex ed which is not just palatable but enjoyable. Parents need to educate themselves, if not about STIs then at least about resources, and share this information with their children.

As for seniors- where do I start. First, we as a society need to acknowledge and celebrate sexual expression among our elders. We need to empower them to access and share information about STI’s. We’re talking culturally sensitive, low tech, large print! The information needs to be shared in a way that honours their life experience and maturity-after all these are the experts when it comes to experience. Lions Clubs, Rotary, seniors centres and care facilities need to offer sexuality education nights and access to a doctor or nurse for confidential, not judgmental sexual health information and health services. We need condom dispensers in the bathrooms at these institutions too!

The Good Thing About Herpes

By Charles Q. Choi, Special to LiveScience

posted: 16 May 2007 01:00 pm ET

The herpes family of viruses can have a surprising upside–it can protect against the bubonic plague and other bacterial contagions, at least in mice.

Research into whether a similar mechanism applies to humans and other mammalian hosts should be conducted, said viral immunologist Skip Virgin at Washington University School of Medicine in St. Louis. “There may be symbiotic advantages to chronic infections with these viruses.”

These new results do not mean people should go out and get infected with herpes, Virgin stressed. They probably already are. Nearly all humans become infected with multiple herpes virus family members during childhood. These germs not only include the herpes simplex viruses, which lead to cold sores and possibly genital herpes, but also the diseases responsible for chickenpox and “mono,” as well as several less well-known ailments. Herpes infections have bedeviled animals for more than 100 million years.

After the initial period of infection, these viruses enter a dormant state known as latency. Many lurk for the lifetime of their hosts “as permanent passengers” without causing overt symptoms, Virgin said.

Virgin and his colleagues experimented with viruses highly similar genetically to ones that cause mono and other diseases in humans. These germs normally cause fatigue and ruffled fur in mice, although the researchers used dose levels too low to cause symptoms.

The scientists discovered latent infections with these viruses could protect mice from bacterial infections, including Yersinia pestis, which causes bubonic plague, and Listeria monocytogenes, which causes one kind of food poisoning, findings detailed in the May 17 issue of the journal Nature.

The herpes viruses spur the immune system to boost levels of a protein hormone called interferon gamma “that in effect puts some immune system soldiers on yellow alert, causing them to patrol for invaders with their eyes wide open and defense weapons ready,” Virgin said. As a result, the bacteria grew more slowly and were less likely to kill the mice. Future research can investigate whether these latent infections protect against other viruses.

Still, while people might benefit from symbiotic relationships with the herpes family of viruses, they can also have serious consequences, such as deafness, blindness, encephalitis and cancer.

“The presence of these viruses seems to be a two-edged sword,” Virgin told LiveScience. “I am quite concerned that we be sensitive to these true human tragedies while recognizing the potential of a new way to view these infections.”

Uncovering any potential benefits of these viruses in humans will prove hard, Virgin cautioned, “since nearly all humans are infected with these viruses at a young age, so it will be hard to find people without them for comparison. ”

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