Occupation: Pediatric Dietitian, Education: Master's Degree
Year infected: 1997
OBs per year: Without suppression 1+ per month, with suppression 1 mild every 1-2
months, post chemotherapy for leukemia, increased frequency and severity of
Prodromes: Depression (usually when I can identify it this is my first clue - I can drop a pen and cry about it), I am sure my husband would say I get "overly emotional" will cry or get angry over anything. Back & shoulder & leg pains, tingling.
Method of Control: Have tried all antivirals, initially took acyclovir, then valtrex,
now Famvir 250 mg twice per day for suppression. I like famvir the best, it hurts my stomach less and does not make me feel in a fog. I don't like the cost of Famvir, $166 per month-but thank god insurance pays 85%. I had good suppressive control before I developed leukemia this past January, since then have had many more outbreaks orally and genitally. I prefer Famvir for suppression because of the regimen, it is the same during a breakout, so nothing to remember, just take two every day.
My Story: January 25, 1997 I met the man I married Oct. 3, 1998. We met through an ad on AOL, and fell in love very quickly. I think we both knew almost from the start we had met the person we were looking for as a future spouse. We began to develop a physical relationship, but before we ever had sex he told me via an e-mail and a follow-up chat online, then a phone call. (at that point we still lived 75 minutes apart and saw each other only twice a week).
Initially, it hit me very hard. I believe the second he told me he had acquired genital herpes from his previous wife of 25 years, I knew I would eventually get it if I continued with him. He had not had a breakout in 6 years so we researched it and decided that if he broke out that rarely he likely shedded rarely also, and did not use condoms, unless he thought he may be prodromal. We did not know then that if he had gone on suppressive therapy it would have lowered my chances of getting it. After several days of contemplation, I decided he was worth the risk, and allowed our physical relationship to progress.
In June of 1997, he took me to Cancun on a wonderful romantic getaway, he did not have a lesion or a prodromal symptom. I had had muscle aches for a few days, but I attributed that to snorkeling on vacation instead of knowing it was the prodrome to my first breakout. Two days later, I developed a sort of tingly, itchy feeling genitally. I went home and applied an anti-yeast medication, as I thought I was getting a yeast infection, but instead of soothing the area, it hurt, a lot. So, I jumped in the tub, washed it off and pulled out a mirror, and had one small lesion that looked like something between a pimple and an ulcer.
I worked at the health department, so I went down to Adult Health, told them I had been exposed and I thought I was having a first breakout, the nurse practitioner looked at it, cultured it, and gave me 10 days of acyclovir. She also told me this was the first case of genital herpes she had ever "caught" within hours of the initial breakout and getting on meds so quickly I would likely never have another breakout. Two days later, my boyfriend had his first oral lesion. We had been told it could not be transmitted or we could not re-infect each other, but he had gotten orally two days after my first genital breakout, a little too close for an argument against re-infection. I had a total of 3 lesions at that outbreak. So, it took me 4 months of being with him to catch it.
We both took acyclovir for 10 days and prayed that was behind us. Until next month, I broke out again, Acyclovir 5 days this time. By October, I was having 3 outbreaks per month. He had another genital breakout. So I asked my doctor for suppression. She did not see it was necessary, but reluctantly agreed for 3 months. I went 3 months without a breakout. Then I would have very mild breakouts, lots of depression, but few lesions. He had more oral outbreaks, and eventually got one on his finger.
I was seeing an internal medicine specialist for another health problem and he gave me a year's RX for Acyclovir, and he got an RX for suppression from his doctor. Outbreaks decreased in frequency a little, but intensity a lot. They became mild annoyances. Eventually, I had my first oral outbreak, with only a few lesions. I tried Valtrex and I think it made me feel "foggy" but my stomach felt better.
We got engaged and were living together and I changed jobs. I moved to working in a major medical center and found a wonderful doctor. When I had a sore on my finger (another re-infection) it cultured hsv2 positive. On subsequent breakout orally, THAT cultured hsv2 positive. Western blots have shown us to both have only hsv2. So, we may be rare, but that is a good argument that we have re-infected each other.
I got leukemia in January of this year, and breakouts got worse. I asked my doc to try Famvir and it helped more and I felt better on it. Finally, my breakouts are decreasing, but I had one oral breakout shortly after chemo (which wipes out the immune system) with 9 lesions, I could hardly eat or drink.
My hubby and I manage it by abstinence or condoms if anyone is having a genital breakout or prodromes. We continue on suppressive therapy. If we have oral breakouts, we just kiss, but don't allow oral-genital contact. I have recently found out the acyclovir cream helps oral sores more than just continuing famvir, I use the acyclovir cream in addition to the famvir 250 mg twice a day orally.
Medical Experiences have varied greatly. Initially, the folks who helped me at the health department were very informed and very professional. My first private doc treated me like a leper and knew less about Herpes than I did, but I was able to "convince" her to give me suppression. A second internal med specialist was better about suppression, and my current doctor has been a world of help by testing me and helping me answer some of the re-infection questions. He wants me to continue suppressive therapy until one year post chemo, then my hubby and I are going to give up suppression and see what our pattern is. Ironically enough, this will take place about Jan 2000, what a way to start the new millennium.
Telling: I have never had to tell a sexual partner, except when it was given to me, and he was so upset he actually shed some tears that I had gotten it. Good communication and love help us manage it and we have a great physical relationship in spite of herpes. At a moment of weakness, I told my mom and my brother, and they were very negative and non-supportive. I would recommend to choose carefully who you tell and tell only those who may be exposed or who are likely to be a support system. Herpes has been much worse for me since chemo and I have become more active in support groups. It is
my revenge against the disease - to not let it stop me from having a good life, and hopefully to help support and inform others. Herpes is not the end of life, just a "change in lifestyle," requiring you to educate yourself and communicate with partners and potential partners. I respect my husband immensely for his honesty and the way he has handled it. I believe managing it has brought us closer together.
I hate herpes, but it would have been a mistake to give up such a wonderful man because of the disease. If I had it to do all over again, knowing it would turn out as it has, I would in a heartbeat. It is important to look beyond the disease and get to know the person who has the disease. I am so glad I did.