Really need some help! Continuous prodrome
Posted , 10 users are following.
I got hsv2 from my ex boyfriend, and think I've carried it for about 10 years. I didn't know though until I had my first outbreak 4 years ago and tested positive for hsv2. Now and again I'd have another outbreak if I was run down, but acyclovir stopped it almost straight away.
18 months ago I started having little outbreaks everyday, some days worse than others. My doctor put me on acyclovir suppressive treatment and it didn't work a bit. This went on everyday for 9 months! I tried everything, I continued taking acyclovir hoping it would work, I took lysine, cut out arginine, detoxed, ate clean, exercised, took vitamin supplements and immune boosters, took vit B, slept well, changed my detergents to non-bio, came off birth control, and stopped having any alcohol. The doctor then tried famvir but no luck. I even had an hiv test to see if my immune system was damaged but it was negative. None of this made any difference at all, I was getting distressed then one day it stopped dead and I had no problems for 2 months. It returned for 6 weeks then stopped for 4 months (I did develop very bad neuro symptoms during this time similar to some of MS).
Now for the past 3 months it's been back, except this time it's constant prodrome symptoms. Tingling like worms under the skin, excessive watery discharge, burning/cold flashes down there, and also some of my neuro symptoms are back. I'm very itchy all over my body too, like little pin pricks of itchiness that jump around my body from head to toe. And my top lip and nose also get the cold/burn sensation. I get peripheral neuropathy on the back of my legs, which moves and goes within hours. I strangely even got it on my wrist last week. This whole nightmare is driving me crazy and making me very very depressed. I cry all the time. My doctor doesn't say much when I go, he doesn't really know what's wrong.
I'm at the stage where my husband and I want to start a family, but I feel like this virus is throughout my whole body now and is so strong. I've read about uterine herpes where the virus gets into the uterus and damages the foetus, causing severe brain damage and blindness. All this terrifies me and is making me not want to get pregnant.
This virus is ruining my life, I can't take much more. Has anyone any advice for me or know of any private specialists I can see? Please help!
0 likes, 53 replies
Arev3991 jenni51978
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jenni51978 Arev3991
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Sorry Arev3991, I haven't received anything in my mailbox
ester80818 jenni51978
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ester80818 jenni51978
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jenni51978 ester80818
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Sorry ester80818, I haven't received any private messages yet. Please could you resend?
FelizCastus jenni51978
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Have you confirmed that these constant sensations are herpes? A pcr swab can be done without lesions and will tell you whether you're shedding or not when you feel like this. If positive, then the sensations are likely caused by herpes. If negative, then it's not herpes, or at least not directly to blame. It is worth confirming, because active herpes should not persist that long and fail to respond to the antiviral meds, so there's a chance it's not due to herpes, at least not directly.
jenni51978 FelizCastus
Posted
Thanks FekisCatus, I haven't had a pcr test done, I really want one though. I live in the U.K, do you know where I could get one done? And how accurate they are? My symptoms seem to be most active just after I've got up and disappear around the evening time, I'm already worrying they'll miss something depending on the time of day it's done.
FelizCastus jenni51978
Posted
That doesn't sound like herpes, not if it comes and goes at set times daily. You'd expect herpes to be constant until it falls dormant, and an episode wouldn't last only a day, every day. If you still want to check it out by pcr test, you will likely need to go private.
jenni51978 FelizCastus
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Thanks for your response, it's nice to hear people's thoughts. I really hope you're right, only the symptoms are so familiar of those I had before outbreaks (just after the time I had my first one), and they sound so classic of prodrome other than the pattern and longjevity of them. I'll ask my doctor for a private referral and see what he comes back with.
jane80952 jenni51978
Posted
Something similar here, sensations I suspect are herpes, positive by serology including western blot, negative by culture, but nothing visible. It's just the base of my nose, lower lip and vulva. I'd love to get PCR but I don't know where/how, does anyone? I suspect Adderal may be contributing. Not currently on birth control so it's not that. Possibly some BV. Frankly valtrex gives me hive-like patches on my face, and URI, at too high doses. Hard to say what is causing what. Most doctors don't know enough about it, esp contributory issues with other medication.
I had a baby who is fine. I went on acyclovir while pregnant - I was undiagnosed at that time but there were questionable symptoms.
This kind of experience is one reason routine screening is not recommended. Skin issues I would never even have noticed before are a huge deal now.
FelizCastus jane80952
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jenni51978 jane80952
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Thanks for your message Jane, are you having symptoms everyday? And how long have you had them for? Congratulations on your new baby
Did you have the symptoms throughout your pregnancy too? I'm very similar to you, the tip of my nose, my lip and my vulva, I wonder what is happening to us?
jane80952 jenni51978
Posted
During pregnancy is when I started having this crack-like sore in lower lip for the first time. There was nothing genitally and nothing around my nose, nowhere else in my body. Since I had had oral sores in years past that were not canker sores and were classically herpetic, I assumed it was type 1. I had had scrape-like sores genitally on occasion but they cultured negative. They never offered a blood test nor any oral swabbing.
In recent months I started seeing someone and was worried I'd give them, or my baby, type 1. It seemed antivirals weren't helping the lip sore, so I went off them . Simultaneously I resumed some unrelated medication that I was on pre-pregnancy and then the scrape-like sores re-appeared. They did a colonoscopy to rule out crohn's or fissures, which were negative. The nose rash appeared in the middle of all this; dermatology doesn't think it's herpes but I'm skeptical. It itches and is bumpy, but doesn't develop into a big sore. It never goes away and I'm on extra valtrex now. This prickly sensation down south is new too in recent months. It improves when I lower the Aderal so I think they're connected. Stimulants can cause skin irritation /acne and some people think it increases herpes viral activity but no one seems to know for sure. Maybe it's both. I'm trying a lower Aderal dose to see if it makes any difference. I've never had this much trouble before. I never get facial acne. I've had great skin my whole life until recently. Ive been in Aderal in years past with no skin side effects.
The only reason I know I have type 2 is they finally offered blood test which came back -to my shock and surprise- type 2 +, type 1 negative, confirmed by western blot. I think I have type 2 at both sacral and trigeminal locations that is causing all of this, maybe in combo with skin irritation from Aderal and valtrex. Infectious disease says type 2 can be oral/facial but would not be strong enough to transmit from that location. I am skeptical. It's definitely there because I had classic sores there before, in fact it's the only place I have ever had major sores.
Are you on any medication that might be contributing?
jane80952
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Ps yes it's now daily
jenni51978 jane80952
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Thanks for getting back to me. I'm not taking any meds apart from acyclovir. It does nothing but i take it anyway in hope something will eventually happen.
Do you mind me asking where you're from? How easy was it to get the blood tests you had? My doctors stares at me blankly when I see him about this, I swear he thinks I'm imagining it but I'm definitely not. I know I'm not a classic case, but I worry I'm the only case where it's spread throughout my body and there's no treatment for it. It's ruining my life
jane80952 jenni51978
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In the US, blood testing (you would want a type-specific test, usually an ELISA) is readily available through any general or Gyno practice or even any STI clinic around the corner IF you ask for it. If you get a low positive result, then confirmatory bloodwork is a little harder to get altho you certainly can.
At least then you would know for sure what you are dealing with (or not dealing with). the blood test cannot tell you where it is in the body. Only swab (culture or PCR) can do that.
I'm sorry this is bothering you so much. Please don't let it. Have children, go about your life. None of this should impact that. For single people, it can lead to relationship rejection but you don't seem to have that issue. There is an important decision about being on antivirals or not, esp in labor & delivery. And if you have it, there is an increased risk of acquiring HIV if a sex partner has it. Other than that, there aren't serious impacts. Vaccines are in the pipeline and would be for people with active infection (not just prevention) so that is another reason to get a diagnosis. (Would you be a vaccine candidate).
jenni51978 jane80952
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Are vaccines really in the pipeline Jane? Where did you hear about them? Is it just in the USA? I'd come over for it if I was allowed the chance. Is there any word when they'll be available? And would they work on people already infected?
I really want a PCR test. I'm going to see my doctor next week. I need anti depressants too, I'm so down I can't even eat anymore
ester80818 jane80952
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Jane you are so well informed! Have you had for a long time? I am praying for vaccine too! I saw some phase 2-3 studies! I wish we can lobby more.. we should push some how.
I'm in Canada and very different here too not sure they do pcr but I will ask my doctor!
I wish the CBC and FDA would not look at this as well not a big deal people aren't dying... I think they need to see how much incidence is going up and how many people are affected who don't even know! I think maybe for the average person who doesn't even know because they barely get symptoms or none at all... maybe it's okay then there's some of us like now losing our minds. I walk around looking at people wondering how many... and then why me.... such stigma! I'm a successful happily married woman with a brand new healthy daughter and all I think about is this (maybe now cause I'm having these ongoing symtoms) ... I Skyped with a gyn/ob in the US who is GHSV positive herself! She actually wrote a book too ... I just purchased it! She said since she wrote her book she's had so many colleagues other doctors nurses etc come to her and tell her. Affects everyone and anyone but can't stop beating myself up! Unfortunately doctors don't know what to do for us. The easy cases get prescription and gone. I'm suffering with shame... anger... worry to pass on to my husband etc. And going from zero symptoms to this...I feel like it's taking over my body and my life... debating if I should stop breastfeeding cause if the hormones or go back on the pill... and the ob/gyn who has herself said not related
... so what is it!!! It's the lack of answers or response to meds. I don't have any lesions but have all these other symtoms that are uncomfortable and won't go away... I keep taking valacyclovir but maybe I should try different brand! So many thoughts...