The Positive Side

Fall/Winter 2003 

The Other “H” Word

Herpes: The hidden epidemic

By Katherine Ota

Sexpert, help! I am one half of a serodiscordant gay male couple who recently got together. Since I already told him I have HIV and we use condoms during sex, do I also have to come clean about my — ugh — herpes?
—Bugged Out

AS ILLUSTRATED IN THE ABOVE LETTER to POZ magazine’s “sexpert” in the April 2003 issue, although being out about HIV is more and more common these days, being out about — or even talking about — herpes is an entirely different matter.

I got genital herpes in 1982 from my new boyfriend at the time, Oded, who had no visible signs of it the first time we had sex, nor did he during the two years I was involved with him. I hadn’t had sex with anyone for a year before we got together, so there was no question as to whether I was infected by someone else.

Amazingly, looking back on it now, but perhaps not unusual for a young woman in love, I never told Oded when I had my initial outbreak just a few days after we first had sex, and I never once brought up the subject during our two years together.

For the next few years, I had one or two outbreaks a year. They only lasted for a few days, tended to occur in the same place in my vulva and were not really that much of a bother. Following in Oded’s footsteps, I never told any of my subsequent lovers about my infection, as I didn’t have outbreaks very often and when I did it was always when I had my period — an easy excuse to avoid intercourse.

Ten years later, after one bout of Bell’s Palsy, two bouts of shingles and one of pneumonia, the herpes outbreaks occurred much more frequently. I also discovered that I was HIV positive during this period. A few years after that, during my second bout of Pneumocystis carinii pneumonia (PCP), herpes lesions exploded all over my vulva and bum, and I unknowingly spread the infection to a finger that had a small cut on it. Up until that point, I had never taken an antiviral or antiretroviral medication. Having witnessed the death of so many people with HIV/AIDS who were treated by “experts” with these drugs in the late 1980s and early ‘90s, I’d formed a strong distrust of both the medicines and the specialists.

However, after one month of having large lesions on my bum and finger, and having had the PCP successfully treated, I finally agreed to take acyclovir (Zovirax). When the lesion on my finger cleared up and those on my bum were reduced to about two, I lowered the dose of acyclovir (it made me feel awful) to the minimum that would keep the infection from spreading. After about six months of living with this condition and not being able to sit down (did I mention that I’m rather stubborn?), I realized that things were really not improving and were really not likely to. So I finally decided to see a well-known HIV specialist, deal with the herpes and start antiretrovirals.

The specialist put me on intravenous (IV) foscarnet (Foscavir) for one month, which made me feel progressively weaker — but the remaining lesions did clear up. She then told me that after starting the antiretrovirals I should overlap them with the IV foscarnet for one week and then stop the foscarnet altogether. When I asked her what I was supposed to do for a prophylaxis for the herpes after going off the foscarnet (by this point I had started to read medical literature), she said that I wouldn’t need any once I started the antiretrovirals and experienced an increase in my CD4 count. Unusual for me, I decided to follow the advice I was given.

That was a big mistake. Things went from bad to unbelievably horrible. Not only did I have terrible reactions to the drugs — nausea, vomiting, constant migraines, hallucinations, insomnia — but because everything was so intensely terrible I didn’t notice (or perhaps didn’t care, as I would have been happy to go on to the next life at that point) that I started to have a herpes outbreak. On top of all this, I realized there was something wrong in one eye. By the time I’d been diagnosed with cytomegalovirus (CMV) and switched to a new, sympathetic doctor, herpes had exploded all over my vulva, bum, finger and the palm of my hand — much worse than it had ever been.

May I suggest that no matter what any doctor tells you never stop prophylaxis for herpes when you first start antiretrovirals.

Since that time, around 1998, thanks to a wonderful new HIV specialist, a naturopathic doctor, a stabilizing period on IV ganciclovir (Cytovene) for both the CMV and the herpes, and a simpler antiretroviral regimen which I’m able to tolerate, my overall health has improved considerably. My current CD4 count is 1,454, up from 57, and my viral load is undetectable, down from about one million.

However, my herpes problem persists. While my doctor recommended 800 mg of acyclovir three times a day as a suppression dosage because my infection is so extreme, I’ve experimented with lower doses. Less can sometimes be just as good, if not better, than more, and quite frankly, I’d rather take the least amount of drugs into my body as possible. For the past four years, I’ve been able to keep the herpes suppressed with a daily dose of 1,000 mg (two and a half 400-mg tablets daily); once or twice a week, I lower this to 800 mg per day (two 400-mg tablets).

I’ve also learned through much trial and disappointment that I absolutely cannot eat chocolate or nuts without triggering a herpes outbreak (see Nutrition section, below) When I start to feel one coming, which for me is small bumps on my bum, instead of increasing the dose of acyclovir, I simply take things a bit easier, get more rest and make sure I’m eating well. The bumps then subside in a few days without breaking the surface.

Herpes 101

Genital herpes is a very common and highly contagious sexually transmitted disease (STD), affecting at least one out of four (about 50 million) Americans. As there are next to no statistics on genital herpes in Canada — even Health Canada quotes American statistics in its publications — it would seem reasonable to assume that the rate of infection here would be similar.

This treatable but incurable STD is most often caused by herpes simplex virus 2 (HSV-2), and sometimes by herpes simplex virus 1 (HSV-1). HSV-2 usually affects the genital area, and HSV-1 the mouth, lips and nose. However, through oral sex HSV-1 can be spread to the genitals and HSV-2 can be spread to the face. The stigma associated with genital herpes is not associated with oral herpes, which is usually referred to as cold sores or fever blisters. Genital herpes, however, is always referred to as herpes.

It is believed that more than 80% of people who have genital herpes are not aware that they have it, as they haven’t experienced any symptoms or haven’t recognized them. Transmission often occurs by people who aren’t aware that they’re infected or that they can transmit the infection when they’re not having an outbreak. It is also not uncommon for people who know that they’re infected to not disclose this information to their sex partners.

Initial Infection

The first signs of genital HSV usually show up two to 10 days after exposure. Early symptoms could include:

  • itching or burning sensations
  • swollen and/or sore lymph nodes
  • fatigue
  • mild fever
  • vaginal discharge
  • headache
  • muscle pain

A few days later, painful clusters of small fluid-filled blisters, bumps or sores (also called lesions) appear in the genital/anal area — on the penis, inside and around the vagina, on the thighs or buttocks. These blisters usually burst, become raw and painful open sores, then crust over and heal without scarring. Lesions can also develop in the urinary passage, making it painful to urinate.

Symptoms can last up to three weeks and vary from person to person. Some people experience very mild symptoms or none at all.

Recurrences

After the initial outbreak, herpes most often lives dormant in nerve tissue in the spine — in the top of the spine at the base of the neck, and at the base of the spine, in the sacrum. When reactivated, it multiplies and travels along the nerve pathways to the surface of the skin. It can lay dormant for years before recurring. Some people only experience one outbreak in their whole life; others have a few a year. Women generally experience them more often than men and tend to have outbreaks around the time of their period, when their immunity is lower. And then there are those whose outbreaks are so severe that they always have to be on suppressive antiviral medications. Even while on antivirals, they sometimes still experience outbreaks.

Among HIV negative people, recurrent outbreaks are usually less severe than the initial outbreak and often become even milder over time; this is not always the case for HIV positive folks.

Transmission

HSV can be transmitted sexually through:

  • kissing
  • vaginal and anal intercourse
  • oral sex
  • skin-to-skin contact

Parts of the body highly susceptible to infection are the cervix, urethra and any areas that are subject to abrasion, as well as warm, moist areas like the vulva, perineum (the piece of skin between the vagina or penis and the anus), scrotum, upper thighs, buttocks, underarms and lower back.

Auto-inoculation (self-infection) can occur by transferring the virus from one part of the body to another through contact with an active lesion — by touching a sore and then touching another part of the body (this can happen through masturbation, and vibrators and sex toys can also carry the virus). Herpes Whitlow is herpes infection of the fingers (dentists, before the regular use of latex gloves, commonly experienced this). Herpes infection in the eye can lead to serious complications, including blindness. HSV can also be transmitted non-sexually through contact sports, where skin may become scraped and then come in contact with another’s exposed sore.

Transmission of herpes during childbirth can cause serious problems to the baby, including death.

Many people don’t know that they can transmit the herpes virus to a sexual partner even if they don’t have any symptoms. This “subclinical” or “asymptomatic viral shedding” is a cause of much distress to those who are infected. Without symptoms, many people are unaware that they have herpes. It is estimated that around 80% of infections occur while there is asymptomatic shedding.

Anna Wald, MD, one of America’s leading researchers on herpes, published a study in the New England Journal of Medicine in March 2000 in which she looked at genital shedding of HSV in subjects who, when tested, had antibodies to HSV-2 yet reported having no history of genital herpes. She compared these subjects to a similar group of subjects with symptomatic HSV-2 infection. The rate of HSV shedding in the two groups was remarkably similar.

Suppressive therapy in patients with frequent recurrences reduces viral shedding and may reduce transmission; however, even with such therapy, it is possible to spread the virus to others. No antiviral medicine has been proven to eliminate the transmission of herpes.

High levels of HIV have been found in herpes sores, making it easier for people with active herpes infections to also transmit HIV to their partners. Transmission of HIV in serodiscordant couples (one has HIV, the other doesn’t) is more likely to occur if the infected partner has frequent herpes recurrences — even more so if that partner is not on highly active antiretroviral therapy (HAART).

While the regular use of condoms may offer some protection from transmitting herpes during anal and vaginal intercourse, the areas of skin not covered by the condom aren’t protected.

Prevalence

Genital herpes is one of the most common STDs in the world, and there is a rising rate of infection in the general population. According to the U.S. Centers for Disease Control and Prevention (CDC), more than 500,000 new cases are diagnosed each year in America. The CDC also estimates that less than 20% of cases are currently identified. The majority of people infected with genital herpes either do not know or admit that they have the disease. Due to the lack of data on herpes, it’s widely accepted that statistics are underestimated.

Studies have indicated that having a higher number of sexual partners is associated with an increase in prevalence. Studies have also shown rates of herpes infection to be higher among women than men, and higher among African Americans than among other ethnic or racial groups in America.

Considering that genital herpes infections are at epidemic levels, it is quite shocking that there are no public health campaigns, not even routine screening, for herpes at STD clinics in Canada.

Genital Herpes and HIV

The wide spread of HSV into the global population preceded the spread of sexually transmitted HIV. There is growing evidence of the connection between the two viruses.

Early in the HIV epidemic, persistent herpes infection was often a first sign of HIV infection. The majority of people with HIV/AIDS (PHAs) have genital herpes — estimates range anywhere from 58% to 81%. Outbreaks in PHAs are often more frequent and severe (larger lesions, last longer and spread over a larger area) than in HIV negative people. Also, studies indicate that viral shedding occurs at a higher rate in PHAs, and this is further increased in those with low CD4 counts. PHAs with seriously weakened immune systems can also experience outbreaks on internal organs, such as the brain, intestines, esophagus and lungs.

Genital herpes seems to accelerate HIV infection. According to the December 2002 Journal of Infectious Diseases, recurrences of HSV raise the blood level of HIV (viral load) — HIV replicates faster, causing an increase in disease progression. And, vice versa, the suppression of HSV leads to a drop in the HIV viral load. For this reason, daily suppressive therapy is usually recommended to PHAs with frequent herpes outbreaks.

Some PHAs with herpes experience severe outbreaks of one or more of the herpes viruses—genital herpes, shingles, CMV — when they begin HAART. This is because during immune reconstitution (the rebuilding of the immune system) low-lying infections can become active.

Herpes during pregnancy

Having herpes does not affect a woman’s ability to have a baby, but the possibility of passing the infection on to the baby can be a concern. The risk of transmitting herpes to a baby (neonatal infection) appears to be higher when the mother is infected for the first time while she’s pregnant (rather than if she acquired herpes before the pregnancy). Studies also indicate that HSV appears more likely to harm a baby if the mother has an outbreak at the time of delivery; in such cases, a Caesarean section is often performed. If a recurrence happens earlier in the pregnancy, the fetus rarely appears to be affected.

Neonatal exposure to HSV can be the result of asymptomatic HSV shedding. Some studies have indicated that as many as 60% to 80% of mothers whose babies became infected had no signs or symptoms of genital herpes at the time of delivery.

Doctors and midwives often suggest that pregnant women who are HSV positive take suppression therapy during the few weeks prior to delivery. The limited studies that have looked at using acyclovir at this time have found no toxicity to the babies.

Herpes infection in infants can be life threatening. Half of all babies infected with herpes develop severe neurological damage, mental disorders or death. The best results are seen with early treatment, before the virus spreads to the central nervous system or internal organs.

Treatment

Herpes infections are treated with antiviral drugs, such as acyclovir (Zovirax), famciclovir (Famvir) and valacyclovir (Valtrex). Treatment should be individualized to suit each patient’s needs.

“Episodic treatment” treats outbreaks when they occur. High-dose aggressive therapy taken for seven to 10 days at the first sign of symptoms shortens the duration and severity of outbreaks.

“Suppressive treatment” is ongoing daily therapy that’s usually recommended if outbreaks are frequent or especially bothersome.

Some PHAs who have regularly recurring outbreaks take the commonly prescribed (or lower than) suppressive dose, and then increase it when they feel prodomal symptoms (like itchiness or pain, which indicate an outbreak is about to occur). Some doctors do not recommend this approach as they feel it could create resistance to the drug.

The incidence of acyclovir-resistant herpes in PHAs is increasing. It is commonly treated with IV ganciclovir or foscarnet. Oral antiviral suppression is then continued after completion of the IV treatment. Cidofovir (Vistide) has also been shown to be effective at treating lesions that don’t respond to acyclovir.

Nutrition

Studies have shown that the amino acid L-lysine inhibits HSV, while the amino acid L-arginine promotes HSV activation. Some people have found that a diet that emphasizes foods with a higher lysine-to-arginine ratio and minimizes foods with a higher arginine-to-lysine ratio helps keep herpes in check. This is an approach that naturopathic doctors advise.

Try to avoid foods that have a significantly higher arginine-to-lysine ratio (and the total amount of arginine is high), including:

  • chocolate
  • nuts
  • seeds
  • peas

Try to eat more foods that have a significantly higher lysine-to-arginine ratio, including:

  • fish
  • meat
  • dairy products

A comprehensive list of the lysine/arginine ratio of common foods, calculated using data from the U.S. Department of Agriculture, is available on some of the websites listed below.

Some people also report good results from lysine supplementation, however, studies have indicated that supplementation alone without the avoidance of food high in arginine has shown inconsistent results. HIV nutrition expert Lark Lands, PhD, supports the dietary guidelines of eating foods higher in lysine and avoiding those higher in arginine, but she cautions against the long-term use of lysine supplementation, as it can create a deficiency in other amino acids.

Katherine Ota (not her real name) is a stoic hostess to numerous members of the herpes family.

Illustration: Linda Montgomery

Herpes Outbreak Triggers

physical or emotional distress

illness, injury or surgery

being immunocompromised

hormonal changes, such as menstruation

certain foods, such as chocolate, nuts, seeds, peas and coffee

ultraviolet light, including sunlight and tanning beds

irritation, like friction from intercourse

chemotherapy

When you have an outbreak:

Keep the sores and the skin around them clean and dry. Wash the area with diluted salt water and pat dry (make sure to wash your towel before reusing) or use a hair dryer on low heat.

Avoid touching the sores. If you touch an open sore, wash your hands or body part with soap and water.

If urine stings the sores, try peeing in the bath or shower.

Wear loose-fitting clothing made of natural materials, such as cotton.

Soothe the sores with aloe vera gel or an oatmeal bath.

Avoid sexual contact.

Avoid creams and ointments containing cortisones, antibiotics and Nonoxynol 9, which can make the outbreak worse.

We are Family

To date, 8 human herpes viruses have been identified. In addition to HHV-1 (predominantly oral) and HHV-2 (predominantly genital) there are:

  Varicella zoster (VZV), (HHV-3) also known as Herpes Zoster, causes chicken pox and shingles.

 Epstein-Barr virus (EBV), (HHV-4) causes mononucleosis and is thought to cause chronic fatigue syndrome. It is also associated with non-Hodgkins lymphoma.

Cytomegalovirus (CMV) (HHV-5) can cause serious infections in the eyes, colon and brain.

Human herpes virus type 6 (HHV-6) is thought to be an AIDS cofactor and is also linked with chronic fatigue and multiple sclerosis.

Human herpes virus type 7 (HHV-7) may be associated with seizures in children.

Human herpes virus type 8 (HHV-8) is the cause of Kaposi’s sarcoma.

Sore Sites: Herpes on the Web

Genital herpes resources from the Public Health Agency of Canada