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Herpes - the virus that keeps on giving

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Hi all

I'm new here and thought I'd share with you what life's been like for me since my diagnosis. If there's anyone out there who's been through what I have, I'd really love to hear from you, as I feel so alone with my particular symptoms.

Many posters here are very lucky to only get blisters or bumps when their herpes flares up. My experience has been horrendous. I contracted the virus in 1998, when I was young, stupid and reckless. About 6 months into a relationship, my boyfriend casually mentioned that he had it. We both thought it was something harmless, like thrush. I had never heard of it before. My boyfriend and I split up not long after and, as I never developed any symptoms, I assumed I hadn't caught it. Last December, however, after being struck down with really bad flu twice in one month, I started getting weird symptoms that just wouldn't go away. Numbness in my arms and legs, swollen glands in my neck, light-headedness, diarrhoea. I felt constantly run down. I saw the doctor many times during January and was prescribed something different every time: iron tablets, IBS pills, Amoxycillin, Ibuprofen. Nothing worked, though. Then, in February, I developed several blisters. Once my doctor saw those, she immediately diagnosed HSV 2. After I told her about my previous contact with herpes, she said that it was totally possible for me to have caught the virus all those years ago and only be developing symptoms now. This left me horrified, as I have had three serious boyfriends since then. I was worried I might have infected them. Thankfully, none of my exes have it, although telling them was awful. Their responses varied from anger and disgust to mild confusion.

Anyway, my doctor put me on 800mg of Aciclovir, but within a month, all the symptoms returned. This pattern continued over the next few months, with flare-ups occurring every time my period was due. As I was still getting all the other symptoms too, my doctor referred me to a neurologist, who said that HSV2 couldn't be the cause of all those and it was most likely anxiety! I'm no doctor but even I know that anxiety can't cause a person's glands to swell up! I only notice the herpes is flaring up when I feel the other symptoms coming on. How can there not be a link? All my blood tests are normal and I don't have any other illness. The only other thing I do have that may be affecting it is heavy, painful periods. Is there anyone out there who has experienced something similar?

I've now been put on a suppressive 400mg dose of Aciclovir, which I'm supposed to take for the next two months, then see how it goes. I've been told I can only take this tablet for up to a year, and I'm not sure what will happen if I get a flare-up after that. Is this right?

The whole experience has been so draining, physically and emotionally. I sometimes feel I'm being punished for my ignorance during my 20's. Finding this website has been great, though, and I hope my story will help anyone out there who has similar symptoms to mine.

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Fairy dust

Hi there

sorry to hear you are having a tough time with H - it is a beastly virus sometimes!

I'm not sure how old you are but I have found that my flare ups got worse the older I got. I cought H when I was 19 and suffered quite badly but it was manageable. However over the years it got progressively worse until I was having almost constant back to back obs.

I had similar symptoms as you - swollen glands (in my groin) constant sore throat, utter tiredness - it felt as if I was coming down with flu but never quite got there!! The symptoms came a day or 2 before each ob and it also made me very low in mood and tearfull. My GP said it was anxiety about having H and it was because I felt ashamed of having it!!!!!!!

I knew it was not in my head but a physical symptom of H as i had suffered for so many years with it. I finally went to a sexual health clinic and got properly diagnosed for the first time. I have been on suppressive Acyclovir twice a day for well over a year and this has been a godsend - I am more or less free from the painful sores and just occaisionally get the odd groin ache and bit of tiredness but it is nothing compared to the debilitating symptoms I was suffering.

There is absolutely no reason that you cannot stay on Acyclovir for more than a year - many people stay on it for years - as long as you have no other medical issues it should not cause any problems.

The clinic asked if I wanted to have a break from meds to see what happend but the look of panic on my face said it all - no way can I go back to the suffering I was experiencing!! I just have to go back every 6 months for a chat and more supplies!! They checked my bloods etc the last time and all was fine.

H is such a weird virus - it seems to cause all sorts of symptoms and to some it is hardly noticable but to others it is really quite difficult to live with at times.

I still try to think positively though and it hasn't stopped me having 2 lovely children with the man of my dreams!!!!

Life still goes on.

I hope the meds help you and you find some relief x

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Hi Fairy Dust

Thanks so much for your reply. It's good to hear positive stories from people who actually live with this virus. It's interesting that you were also told your symptoms were due to anxiety about having herpes. When someone medically qualified tells you that, it's hard to challenge them, even though you know your own body better than they do. I think doctors are too quick to write off symptoms that are difficult to diagnose as anxiety or stress.

I was 25 when I contracted the virus and I'm 38 now. I think you must be right about the virus worsening with age. Also, I've since realised that too much sugar in my diet seems to cause more frequent OBs. When I first became ill it was around Christmas time and I was eating lots of rubbishy food and drinking more alcohol than usual. I've noticed that my symptoms are definitely worse whenever I'm not looking after myself properly. I guess the diagnosis has been a wake-up call for me to improve my diet and overall health.

Can I ask - how did you go about telling your partner? I imagine that's quite hard. I'm a single mum at the moment and, to be honest, this virus has put me off being with anyone. I feel undesirable right now, to say the least! I hope that feeling will pass, when I get used to the condition. It's hard not to feel that way when I get so many OBs.

Anyway, thanks again for the advice (particularly regarding the Aciclovir - that was reassuring to hear) x

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Fairy dust

Hi again israel

Please don't let the virus put you off dating - you are not an ogre - you simply have a virus that many others carry as well! - you are still lovable and desirable to the right man!

hopefully the meds will help and you will start to feel a bit more confident.

I found the best way to have the talk was to ask if they knew about cold sores and kind of explain it as the same but down there!! I must admit that I always waited until I knew a guy was really into me emotionally as well as sexually (before having sex) as I didn't want to waste time telling someone who I knew deep down was not worth the effort!! H does sort of make you pick better guys actually so you don't settle for losers!!!! - one good side effect of the virus lol

I'm not saying it is always easy because it isn't but I can honestly say that I have not been rejected because of H. It does take away the spontinaeity of casual sex but I wasn't really bothered anyway as I guess I was liable to be more concerned about my sexual health after getting H when I was 19 - it could have been so much worse!!

I am now 46 and sometimes I do get angry and yes sometimes I am full of self pity for the way H has shaped my life in many ways. But seriously, life goes on and I am thankful for all the great people and things I have in my life - I am so fortunate compared to so many others and I am sure that someday soon you will feel the same!!

Take care of yourself and your Children and hold your head high x

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  • The Hive is Thriving!

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