Hoping someone can understand so I feel like I'm not going mad.
I've had hsv2 for most likely 10 years, but had my first bad outbreak 5 years ago. On and off for a few years after I've had the occasional mild outbreak, but for the last 2.5 years I've had prodrome symptoms every single day.
Tingles, tickle crawly feelings down there, hot and cold feelings, peripheral neuropathy, splits in the skin, watery discharge daily and that's just down there. I've also had widespread neurological itching, some burning patches, mild encephalitis symptoms affecting muscle coordination and slurred speech, and intermittent ear pain which many Hsv(1?) sufferers complain of.
For the last 6 months I've had a new problem... crazy urinary retention with a constant mild feeling of burning or pressure like I need to pee all the time. I had it for months, then it disappeared for a couple of weeks, but now it's back (doctors tested for uti which was negative several times).
I'm feeling more and more affected by this all the time and no antivirals seem to work (tho I'm on valrex suppressive treatment at the moment and when I take a break it gets worse).
Can anyone suggest anything I can do now? I'm really desperate, I don't know how much more I can take. I used to be happy and always smiling, now I have bipolar due to the ongoing issues, and I'm really low. Im 32 and once again an putting off trying for a baby as I feel it's effecting every area of my body so I'm scar s of interuterine herpes getting to the baby. My bipolar is now starting to effect my marriage too because I'm so bad during the lows (which coincide with symptoms at their worst).
I'm taking 400mg twice daily. I've been on that or about 6 months, but before that I was on the same dose as acyclovir and even tried famvir, but they don't really work. All the antivirals help keep things to a minimum or else it multiplies even faster, but they don't stop the prodrome symptoms and the random symptoms on different parts of my body. I know it's herpes, and nondoctor or specialist have been able to give me any explanation they just shrug. They all say if I get pregnant it's unlikely the baby would be effected internally, but I feel like it's all through my body now. I'm praying Bill Halfords Theravax passes its trials and is available soon, the depression is becoming really bad now
Hi jenni, i am at my wits end with it affecting my life everyday, most frustrating no one believes you can suffer from ongoing problems. Awaiting neurologist.appointment and pain management next. I am in uk wbu?
I'm in the uk too Claire. I hope the neurologist listens and offers some advice. I've not had any luck, and be seen doctors, neuros and gyno's and all of them do two things... lol ok at my blankly and have no answers; but also tell me it wouldn't be herpes because the antivirals would work. They're wrong, I know prodrome symptoms from the early days when antivirals did work. It's become resistant to them that's all. It's resistant to all meds, and I've read a lot online where people have these problems too, and it's all hsv related. It's a nightmare. I'm trying to get on with life, but it's worn me away to nothing now, I'm not the same person I was and I'm very angry almost all the time. I really hope Theravax passes its clinical trials, just living in hope right now. I hope your appointment helps and they don't dismiss you
If you have access to pcr swab testing for HSV2 (you'd need to go private if in the UK), you can do an internal swab whenever you feel you are having a herpes related issue in the area. If positive, then I guess the symptoms you have are attributable to herpes. If negative, however, they may not be. Basically, if the herpes virus is flaring up enough to cause issues, you'd expect it to show up in a sensitive swab test like pcr. Maybe that will help guide you.
Thanks for your advice, I asked the doctor weeks ago about getting a pcr test and she said she'd look into it and let me know. I've heard nothing, so going to go back tomorrow. Even if it's positive tho, they couldn't do anything anyway cos the antivirals aren't working enough. I wish drs would take this disease more seriously and try to understand it more
I forgot to mention that his kind of herpes is not contagious at all. Your baby will not be born with it. Also, cistitis, gastritis, esophagitis and gum infection are all due to herpes. Doctors told me that urine tests will never show any bacteria. It is a shame most of doctors do not know that. It took me a long time until I found those doctors in Brazil. Everybody was already thinking I had cancer all over. I could not get out of the bed until I started taking acyclovir and cut off lots of high arginine content foods. But only when I met a native of the Hopi tribe in Arizona I discovered Chaparral herb.
I wrote a previous message with a link for the Chaparral herb which cured me for good in two weeks. I guess the message is not showing yet because it needs moderation, maybe because it contains a link to buy it. I know you are in the UK and Chaparral is only available in the US. Please let me know if I can be of help if you are unable to get it through the companies which sell it here. After you get cured you will be able to eat again all those delicious food high in arginine which cause herpes, like dark chocolate, seeds, nuts, orange, etc.