As many of you have heard, a vaccine for herpes went through the first human trial in 2016 on the island of St. Kitts. While there is much controversy surrounding these events, the fact remains that this experimental vaccine has changed the lives of many of the original trial participants, including myself.
When I first went public I was questioned constantly why I was the only one to go public. This is a great question and while that answer has many parts, I often question that decision based on the replies of trolls and hateful comments in print. Other than the worrisome and fearful nature of people with herpes, there is also the deeply rooted issue of the stigma that is constantly over one's head. For these simple reasons, many of the trial participants did not wish to come forward and in many ways, I can’t say that I blame them. The comments can be hateful and vicious.
Regardless of this fear, one of the female trial participants, Mel Smith (1) decided it was time to tell her story and agreed to an interview with a women health magazine. Currently, she is still in remission. This is a very important point to remember.
While keeping in touch with a few of the trial participants, I remember one woman in particular, who I will refer to as – Lynn. (1) Unfortunately, this memory of her is not because she is an awesome person, it is because she suffered from herpes in the most terrible of ways; emotionally and physically. So much so it almost seemed unreal to me, and quite frankly I too suffered quite bad, but this was on a whole new level of pain I could not imagine. After much internal debate, Lynn decided it was time to tell her side of the story and in full disclosure. After discussing it with her, I thought it was best to let her tell you in her own words. . .
My name is Lynn and I have Genital Herpes.
Today as I write this, I am on the fourth week of an outbreak that will just not go away. Even though I received the vaccine, Theravax, and it helped me tremendously, there is no place for me to continue receiving this treatment. A treatment that stopped my outbreaks in its tracks and allowed me to have a life again. It kills me that this treatment is not available for me and many others. It was the only thing that ever worked for me and I tried everything.
I was almost 20 before I ever had sex and that was with my college boyfriend. It was a good relationship – lasting over four years with a young man who truly loved me and with whom we parted as friends. Unknown to me, it would be the last relationship of my life where I would be STD-free.
In my lifetime, I have only slept with four people. It was my second boyfriend that gave me the unwanted gift and from the very beginning, this roller coaster relationship was troubled. As a child of a divorced home, whose father was often absent in my life, I didn’t have the emotional tools to just walk away. I always thought that if I just tried harder I could make him love me… the way I loved him.
On the very last breakup, I was reluctant to take him back. I was tired of how he treated me and I wanted to move on. I deserved better but once again, I caved. I knew he had slept with someone else during our most recent breakup and I also knew he had not been faithful during our time together. I remember thinking my risk was lower with him than with someone new whose history I wouldn’t know. I should have forced him to get tested, but I didn’t because we were solid middle-class people and surely if he had noticed something wrong, he would tell me, right?
Within 7 days of dating him, I knew something was wrong. My skin was on fire and I had a weeping open sore. I knew immediately my diagnosis – I did not need anyone to confirm it, although my gynecologist did, and then a final confirmation a week later with the lab results from the swab culture. My life changed forever.
I came to realize later that he was almost certainly aware he had contracted an STD when he came back that last time. I believe he knowingly didn’t tell me because he didn’t know-how. It may have even been that he didn’t like to see me moving on with my life. Why did God just not let me get gonorrhea or chlamydia? I would have learned my lesson, learned how stupid it is to take back a man with a history of being unfaithful. But that’s not the lesson life delivered to me. Life delivered herpes and there is no going back.
How I am Different.
There are millions of people infected with this virus every year. 90% of them have symptoms so mild that they say most never even know it. Or at least that’s what they say – I’m not sure I believe this, but the point is, of the 10% who experience symptoms, 90% of those people have outbreaks only a few times a year. Their body controls the disease quite well on its own and the rest of the population can simply pop a pill to stop the outbreaks from continuing.
I am 10% of 10%. I am in the percentage of people who are the worst possible case. Symptoms all the time and many in this unfortunate group of people do not respond to any vitamins, supplements, or even antivirals drugs.
From the get-go my case was different. My gynecologist tried me first on Famvir, then on Valtrex, then on Acyclovir. I tried as much as 2 grams per day of Valtrex with absolutely no result. I lived in a world of physical agony. I drove to work with an ice-cold coke can between my legs and I came home to a 45-minute hot shower every night.
I lay awake at night crying from the pain, sleeping with my tail bone pressed to a bag of ice. This virus is the most painful thing I have ever experienced in my life. I know women who have said they prefer childbirth without an epidural to the pain of an outbreak. I believe them. I live it every day.
After multiple desperate appointments with the gynecologist who diagnosed me, he finally told me not to come back. There was nothing more he could do for me. He had tried me already on the only 3 drugs available, and those three drugs all work on the same enzyme so they can’t help people whose virus is resistant to acyclovir.
This was in 1999. I was 25 years old. The internet was new and in the few H forums that I could find, there were few other people like me, who hurt not from neuralgia but because of very active, replicating viruses that never stops, just one ob tumbling into the next. I was alone in a universe of unending physical pain.
My primary outbreak seemed to go on for two years and there was never a single day in those two years where I did not have symptoms. In retrospect, what was happening is that the first one never cleared before the next one started. I couldn’t tell the difference. I felt like I had sat in battery acid every night and it wouldn’t end. Constant pain with no relief in sight. It was impossible to even think about anything else because my skin felt as if it was literally on fire, most of the time.
I consulted doctor after doctor. None of them had ever met anyone who did not respond to antivirals. I consulted an infectious disease specialist, and she chased me out of her office telling me I should be ashamed to consider my condition a problem when she had people dying of AIDS in her office every other day.
She made me feel small and stupid and selfish like my pain didn’t matter, and I sobbed as I left her office. Her derision of me was so devastating, and it dawned on me for the first time that maybe no one would ever be able to help me. I avoided doctors altogether for a long time after that because of her pure scorn of me and my condition shamed me speechless.
In my best estimates, between 1999 and 2018, I have spent more than $50,000 chasing the answer to why I don’t respond. I estimate that I’ve had about two outbreaks per month, each lasting about 12 – 14 days, with sometimes maybe two days before the next one starts (but more often no break at all), for most of the last 19 years.
I have tried every snake oil treatment you can imagine. I have tried every supplement with even a remote chance of helping me – lysine, red marine algae, olive leaf, melissa (lemon balm), lauricidin, anti-yeast supplements, peppermint oil, CLA, BHT, various immune complexes, colloidal silver, isotonic opc3s, transfer factor, DHEA, reservatrol, insane amounts of vitamin D and vitamin C. I have tried no sugar diets. I have gone gluten-free. You name it, the list goes on and on. I can’t even remember them all.
I contacted the University of Washington, even contacted Teri Warren, who is considered an expert on this virus. She had not a single word of help or encouragement because there are no answers for someone like me. Around 2006, my unending virus kicked off a thyroid firestorm which later led to fibromyalgia and chronic fatigue syndrome. I was a walking dead person at age 33. My skin was yellow. My hair fell out in clumps. I would stumble through my days and yet be so wired from adrenal fatigue that I could not sleep. My heart would race, and I would like awake at night in my bed and wish that I would die.
This went on for five years.
I finally found a holistic doctor at a Fibromyalgia and Fatigue center who helped me. She was convinced that H was the root cause of my illness. We tried IV drips that fed natural antivirals and high doses of vitamins directly into my bloodstream. We tried the chickenpox vaccine. We tried Imiquimod. We also tried just simple pain management like lidocaine patches over my tailbone area, thinking that if we couldn’t beat the virus we could at least mask the pain.
It didn’t even touch it. Herpes just pushed it aside, like a leaf in the wind. Fortunately, though, this doctor eventually did find an unusual thyroid issue that standard labs don’t measure for and prescribed me a T3/T4 compound that started a very slow climb out of the CFS though my outbreaks continued unabated. It took another two years to return to relatively normal in terms of energy and ability to sleep. Then this wonderful doctor left the clinic to go into hospital consultancy, and I was back to a gynecologist who knew less than 10% of what I know about this virus.
The Chronic Under-education of Physicians about this Virus
Nearly all the doctors I have consulted about this disease over the years have been less than useless. It is my personal opinion that they are very under-educated about what we live with. I am not blaming them personally but what they were taught years ago in med school, is completely off the mark from how herpes affects your body. For whatever reason, I contracted an acyclovir-resistant strain way back in 1999. And no one knows why or how this happened.
I’m not a sex worker. I don’t have HIV or any other STD. (Believe me, I have been tested at least 7 times for anything and everything that could be mimicking H and there is nothing else.) It just makes no sense and yet here I am, going on 19 years of it. Most doctors will tell you they never run into anyone with resistance, but the truth can be found in the numbers of people flocking to the herpes forums today for answers. If the antivirals worked for everyone, we wouldn’t be online night after night seeking relief. In 1999, I couldn’t find anyone like me. Today I have met dozens with cases similar to mine and many who do not respond to the three traditional meds.
Looking back, I’m glad I didn’t know in 1999 that nearly 20 years later the FDA would still not have approved a SINGLE new medication to help people with GH. We’ve seen a series of them fail in trials or get shut out by the FDA. Imiquimod was the first one I remember, but there have been others. I have learned that much of the grant money for studies on H continue to test non-live vaccines which are just repeats of earlier failed trials with a fancy new name. Almost none of the grant money ever goes to drugs that have real promise and that would attack the virus in a completely different way. I often wonder if it’s because Big Pharma makes billions giving people like us antivirals that will never cure us but always keep us dependent on meds. They don’t care about people like me who fall through the cracks.
My Experience With Dr. Halford
Part of my reason for writing this is to tell you about someone who did try to address this. A few years ago there was someone who helped me and this was Dr. Bill Halford, a scientist, and virologist. If you have read anything about this disease, you know of him. He participated in a secret Facebook group where I was a member and he answered our questions. He had lots of ideas about why some of us are chronic. He was the first person who ever explained to me how the virus works on a cellular level and why some people like me have such an awful case.
I had an opportunity to get his vaccine and within a few weeks of receiving this experimental treatment, my outbreaks came to an abrupt end. For nearly a year my body was completely normal. Even after they returned, it took a long time for them to return to the chronic state of my past. Zero side effects other than a tiny scar on my leg where the injection was given under the skin.
Bill’s vaccine was a live vaccine. A blood test before my vaccination measured that I had very few antibodies to herpes, which was what Dr. Halford suspected in the first place. It was no surprise of course because obviously, this virus has run amuck in my system since day one. There is something seriously wrong with my body’s ability to fight this disease and its ability to recognize it.
Bill’s vaccine made my body develop antibodies to the herpes virus. My immune system responded as it should have been doing all along - just like everyone else on the planet, and for the first time, I experienced a period of remission. I cried more tears of happiness than you will ever cry in your life during those months, I guarantee you. The relief was unspeakable.
Unfortunately, for some like me with wacky immune systems, the body slowly forgets the lesson and over time the symptoms slowly came back. Bill had warned me of this ahead of time and told me that I would be a person that would likely need a shot every year for the rest of my life. This would more than okay with me. If I could get it. But I cannot.
You see, in the field of herpes research, the lobby against herpes vaccines is very powerful. A vaccine that makes your symptoms clear up for months or years means that big drug companies lose millions in antiviral sales. They don’t care that these medications decimate our livers or that they work for fewer and fewer people these days. They don’t care that we experience pain that obliterates our ability to think of anything else.
Cases like mine should make them realize that a vaccine-like Bill won’t stop the sale of acyclovir products. Most people would still need them but people with particularly chronic cases would benefit tremendously. A vaccine that helps but does not cure is good for those of us who suffer because it means it has a better chance of making it to market if it doesn’t threaten the wallets of the folks who make the antivirals.
Dr. Halford died in 2017 and I will likely never receive the vaccine again because it’s sitting in a freezer where I can’t get to it and the American drug market is controlled by people who don’t want me to have it. If there were any justice in the universe, they would approve it for compassionate use for people like me.
I can tell you I would give up 10 years of my life to have access to just one dose a year. See, I can live with the outbreaks if I know there is a period ahead of me where I’ll have a break. But I never have that promise. Bill was my best chance and now he is gone. My next best chance is after menopause when female hormones slow down and many women report a slowdown in outbreaks. That’s at least 10 years away for me.
If you think I’m wrong and you are a doctor or a scientist or a researcher who thinks you can help me, then by all means get in touch with Rich and he’ll put you in touch with me. I would fly to North Korea for something that worked. But I won’t hold my breath because I’ve been waiting almost 20 years for a miracle or for even a new herpes drug to hit the market that could help me and there hasn’t been any.
As for Dr. Halford, what I would like you to know about him is that he cared. He wasn’t a mad scientist as some are saying. He patiently listened and answered questions. He educated me on the virus. He didn’t push me into trying it or try to recruit me. He showed me empathy.
He was wicked smart when it comes to the little bastard taking up residence in our bodies. He was a dying man with an altruistic heart who wanted to do something good for people with chronic pain, and he threw me a hail-mary pass on his way out of this world. I loved him – he was my friend and a champion for our cause - and I am so glad I had the opportunity to know him before he was gone.
The Silver Lining
In my opinion, his death is the single greatest loss that the herpes community has ever experienced. He was the ONE person in 19 years whoever gave a shit about this one suffering girl.
Now my story is a sad one but it’s a real one, and if you are reading this I hope that now you can say to yourself: “Wow, things could be much worse for me.” Truly. Stop feeling sorry for yourself and be grateful that most of you will never suffer at this level. I wanted you to read this and count your blessings.
I want to also share that, 1) you are not alone and 2) this disease is not your fault. This virus has a way of alienating people and causing unbearable loneliness and shame. It shouldn’t, but it does, I know.
Recently I was cleaning out some old keepsakes. I realized as I looked back at all my high school and college nostalgia that in my mind, I keep a timeline of “Before Herpes” and “After Herpes.” And somehow despite many good things in my life, I’ve been beating myself up for years for being young and stupid. Somehow, I had come to think less of myself for having contracted this disease. Years of berating myself in my head: how could you be so dumb?
This time it hit me. These were all good and happy memories. Everything I was before is still who I am. Facing those good memories has been so hard for me because my life since then is so marked by physical pain.
I realized though that we can’t refuse to remember the happy times just because now we have this virus. The wistfulness of pre-virus times in your life can shut you down. You have to consciously choose to rise above it. Let that shit go. I’m working on it and you can too.
And if you are sitting out there feeling bad about yourself because you contracted an STD and this makes you feel bad or dirty, please hear me: If this could happen to me, then this could happen to anyone. I’m an intelligent person. I was a star student. I didn’t sleep around. I’m the girl next door. I’ll bet you are someone similar.
Also get this: I own a business with dozens of employees in a highly professional industry. I earn an astonishing income that has far exceeded my wildest expectations. Yet I can’t even buy my way out of this.
So it’s not my fault and it’s not your fault either. A million other people have unprotected sex without this consequence every day, and this didn’t happen to them. So why should we feel dirty when they don’t? This is just the hand we were dealt. You can’t think of yourself as diseased or bad or careless just because this happens to you.
Never think that for one second that this disease is just for poor people or unsuccessful people or people without access to healthcare. It’s also not a disease that only happens to promiscuous people or drug addicts. I have girlfriends who have slept with upwards of 30 men without protection and never had an STD.
Meanwhile, I have never even had a one-night stand and I got my disease from the second man I ever slept with when I was 25. It happened to me anyway. And I am not the only one. So YOU are not the problem and YOU didn’t do anything to deserve this. Bad things sometimes happen to good people and life isn’t always fair. But, I can promise you that life DOES go on even for people like me who hurt every day.
For one, I’ve met some of the most amazing people ever because of this disease. People to whom I’ve been able to bare my soul and find encouragement, support, and camaraderie. People who I respect and who respect me in return. People who will be my friends for life.
I have also had successful relationships despite this disease. No man I have ever told didn’t want to see me afterward. I am married to a wonderful man who could care less -he loves me for who I am, and he accepts the risk that comes with being with me.
It kills me that we can’t have a normal sex life, but all the same, it’s me who feels sorrow about this, not him. He thinks he hit the love jackpot when he found me and constantly tells me how beautiful I am to him. People will still love you despite this disease. I promise you that.
If you have yet to share your diagnosis, I encourage you to trust someone. If you tell a few people in your life, you might be surprised to learn that people in your inner circle also have this disease. I discovered that a very close friend has it and mind-blowingly, a very close female relative who also contracted it from her second husband – her second sexual partner in her entire life.
She, like me, has had fewer partners than she can count on one hand. She is successful, college-educated, intelligent. It didn’t save her from this virus. Fortunately, her body kicks ass on this virus and she never has outbreaks.
There are some things in which we are lucky despite this disease. First, be glad that we live in a time where we can go online and meet others to talk about our despair and our fear and our hopes for the future. This must save countless people from desperate measures. Second, we live in a time where medical breakthroughs happen all the time. We might live to see the day that they beat this thing.
Lastly, I consider herpes the great equalizer on the relative scale of life problems. Considering the magnitude of tragedy this virus has brought into my life, all my other problems always seem small in comparison. I don’t sweat the small stuff anymore. Ever. Sure, there isn’t a day that’s gone by that I haven’t wished for something different. If God would allow me to lose this disease but never have sex again, I would take it in a heartbeat. But this is the hand I was dealt and this is the life I have to live. I will live it well, despite everything.
So wake up each day and face the world knowing that this doesn’t define you and it never will. Be kind to someone today. Say a prayer for someone. Help a friend or neighbor. Be good and hope for the best.
I’m out here hoping with you.
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Bodywork and Myofascial Release Training
Ailsa Keppie, Nov 01 2019
For Somatic Sex Educators and Professionals in the Field of Sexology. About Myofascial Release Myofascial release is a way of connecting to the body in a profound way.
For Somatic Sex Educators and Professionals in the Field of Sexology.