Hi, I have a similar issue.
I was diagnosed with HSV-1 when I was 16. My first outbreak was severe. sores everywhere in my mouth, flu symptoms, headache, swollen lymph nodes. etc..
I was then diagnosed with HSV-2 genitally at the age of 23. I had no outbreaks when I was diagnosed. My college boyfriend did at the time. not me. I was diagnosed with both via blood work.
For 10 years I would maybe get a cold sore every 3 years. I would have a genital outbreak every year. So I was really able to tolerate these viruses.
The past 2 years. All of a sudden I was experiencing outbreaks inside of my mouth on a specific area of my gums (behind my two front teeth) and the roof of my mouth, and also experiencing a genital outbreak at the same time. With these outbreaks I will get the flu like symptoms everytime. Headache, malaise, swollen neck glands. But also nerve pain. Like nerves in my neck would hurt and nerves in my scalp would hurt. This had never happened to me before. The outbreaks were happening about every 2 weeks. After suffering from both viruses attacking me at the same time every 2 weeks for about a year, I broke down and saw my gyno because she was the only one who would half way listen. She prescribed me 1000mg of valtrex a day for suppressive therapy. I started with only taking 250mg because I wanted to see if a lower dose would be effective..
Presto...no more outbreaks....for 9 months. Then fast forward to now. I started a severe outbreak while on the suppressive therapy and so far it has lasted 11 days. This outbreak is the most severe to date besides my initial outbreak, with new symptoms...I started with the flu like symptoms as usual, and then had painful sores on my gums, roof of mouth and genital area. I had the nerve pain in my neck. But this time I had a different type of headache. It was like there was pressure in side of my head or like someone was gripping my head with their hands. I also had moderate neck pain located on the back of my neck below the skull. I can describe the neck pain as just sore and achy. I have never had those 2 symptoms before. I thought being on suppressive therapy would at least reduce my symptoms during an outbreak.....?
I am so scared that one or both of these viruses is trying to travel elsewhere inside my body. I know that if it travels to your brain or organs, there is a high fatality rate. I am so worried.
I have had bloodwork done for auto immune disorders (lupus, lyme disease, rheumatoid, and for anemia..) all came back normal.
I have had ultrasounds of my liver, kidneys, pelvic area, and nothing abnormal. Only thing that came about is that I had a sightly over active thyroid. And the doctor advised not to treat it since it was mild and treating it could make it worse. I also had nodules on my thyroid that were biopsied and are not cancerous. I do not have HIV either.
I cannot figure out why all of a sudden my body cannot control these viruses and I am having frequent outbreaks. What are these new symptoms? Is it going to kill me? Have you heard of this before?
I am a 30 year old female, no children, no known health issues.
Please advise. I am desperate!!!