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
FelizCastus jenni51978
Posted
In all of these cases with continuous, long-term sensations, but no actual outbreak and no response to the antiviral meds, I really don't think it's herpes to blame (at least not directly). A pcr swab would be most interesting, but I suspect it would be negative.
The therapeutic vaccines currently in the pipeline will take some years to go to market, and that is assuming they successfully complete all trial phases and other requirements. As a result, as much as I wish there was a vaccine or better treatment options available to us, I wouldn't hold my breath.
jane80952 FelizCastus
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You're not a clinician so how would you know?
jane80952 FelizCastus
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On other patient forums I have seen people associate Aderal with increased outbreaks. Whether direct or indirect. Similar to caffeine. I'm considering PCR if I can find it; I wouldn't worry about this if I didn't worry it is increasing odds of transmission.
FelizCastus jane80952
Posted
Because that is very atypical of herpes and I have seen Terri Warren and others similarly respond in such cases. Basically, if the meds do nothing to improve the situation, then it's not generally thought to be directly due to herpes.
ester80818 FelizCastus
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I do think I have other items to look at and I hope you're right that not the herpes but I did round of antibiotics and meds and symptoms not better so I'm worried not responding to meds or virus just going crazy cause postpartum and hormones and immune system all over the place it makes sense but I can't find anyone who's had children then supports this theory
... just feel discouraged..
Do you know if there are any clinicians on here? Supporting the cure or help?
ester80818 FelizCastus
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FelizCastus ester80818
Posted
She is a respected herpes specialist and registered sexual health nurse who has her own clinic (Westover Heights) in the US. The clinic's website has a herpes Q&A forum that she directly responds to for a fee. You can look into that as well.
ester80818 FelizCastus
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sarah53590 FelizCastus
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I wonder if vitamin deficiencies or something could be depressing the immune system. I'm seeing a naturopath dr and it seems promising.
jane80952 jenni51978
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Regarding vaccine, see
http://abcnews.go.com/Health/story?id=117961&page=1
And http://acsh.org/news/2016/03/10/a-vaccine-for-herpes-erupts-in-the-news/
They are saying it doesn't help if you have type 1, which they incorrectly equate to "cold sores." So if you have type 2 but not type 1, even if it is in your mouth, the vaccine would help you. This is why you would need to know which type (1 or 2). It is still in clinical trials and so not yet on the market.
jenni51978 jane80952
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Thanks Jane. I'm really interested in becoming a candidate for testing. I've emailed them. I need to do something and am prepared to travel. Imagine it came on the market though and it worked.
Out of interest how many different antiviral ladies have you tried? Which have you found the best? I haven't been on valacyclovir before, I'm wondering if it'll kick it from a different angle
jane80952 jenni51978
Posted
Hormonal changes can influence herpes activity. Many people report an increase in outbreaks with menstruation or perimenopause. I didn't have these symptoms post-partum other than the lip issue. But I was on acyclovir and was not in Aderal then. I'm not criticizing or diminishing the advice knowledgeable patients can give each other, above all this is not all in peoples' heads and much isn't known. Terri's forum is a good idea. I'm going to try to get PCR and continue changing medication dosages. Be kind to yourself- post-partum is tough enough without all this- I didn't think I had type 2 at that time. I thought type 1. My child is over one yr old now so we are past that wonderful but stressful time.
jane80952 jenni51978
Posted
I just want to add, regarding what are "typical" herpes symptoms, the kind of symptom in this posting might be more typical than anyone realizes. People tend Togo in for herpes evaluation when they have significant sores. The rest they tend not to even notice, especially if they are undiagnosed. PCR is not widely available to my knowledge. So, if no one has minor symptoms definitively evaluated, and they would not show up as herpes on culture, and blood testing as we know says nothing about location, it is possible some of these more minor symptoms are actually very "typical". That is what they are finding regarding minor scrape-like abrasions that are not the "classic " big sores. All of this means herpes is just a skin condition that is generally very mild. Type 1 is not limited to oral nor type 2 to genital, despite preferential location that is likely due to evolutionary development. Herpes is probably far more common than anyone has measured. It should not be the source of consternation that it is. My soap box for the day.... Based on my experience with symptoms and the diagnostics.
jenni51978 jane80952
Posted
That's true, because I had 9 months of scrape type sores and had them culture tested 3 times which all came back negative. They are hsv2 though as they followed the same prodrome symptoms I had with my first few outbreaks (which had positive culture tests). It's like the virus is intelligent and is hiding itself.
So if I had a pcr test, and it was say positive for hsv2 DNA in my blood, what does this mean exactly. Would it mean the virus has somehow got into my blood? Or is it always present in the blood if you have it? I'm concerned that if it's in my blood in high volume, it will be transferred to my baby through the umbilical cord (if I were pregnant) and this would damage the development of my baby. Does that make sense?
ester80818 jenni51978
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I don't think this can happen, highest risk is contracting in 3rd trimester. I think I read close to 25-30% of births are with hsv positive mothers. That's only the ones we know of!
ester80818 jenni51978
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FelizCastus jenni51978
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Pcr swabs don't test herpes in the blood (only lesions and secretions) and that's not how babies usually get it (via exposure to active virus during vaginal delivery). Just fyi.
FelizCastus jane80952
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Viral culture can still pick up instances of such atypical recurrences, just probably not all, as it's less sensitive than pcr. Should still be able to indicate if there's shedding or not in some of these cases, though.
jane80952 FelizCastus
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Jenni above had 3 negative cultures but positive serology. Exactly what happened to me, and I cultured quite timely the last 2 of 3 times. The scrapes are prob milder for whatever reason,not progressing through or skipping the stage when most virus would be present to detect.
I know PCR looks for actual viral material thru secretion or swab. PCR doesn't assess blood. The virus is never in the blood itself (unless maybe disseminated unusual cases?) so in blood, they are not looking for virus. Rather looking to detect antibodies we produce against the virus because those antibodies do runaround in blood.
jane80952 jenni51978
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The blood tests aren't looking for the actual virus in your blood. Usually it's not there. But the blood will be carrying specific antibodies around to help fight the virus inyour skin. The test is to ascertain that you indeed have such antibodies , because they would only be there if you have encountered the virus
jane80952 FelizCastus
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I read there are cases of it being disseminated, babies can get it through the cord, I believe, in certain circumstances. You do need to consult your Ob Doctor about possible transmission during pregnancy and childbirth. If it's managed well and there is no active lesion in the birth canal third trimester, I believe they allow vaginal birth but you must be on antivirals. That's how I was and my baby was fine.
jenni51978 jane80952
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Thanks Jane. I believe it has disseminated though, I had months of neuro symptoms ehich were quite serious at the time and are now milder. When I was reading about disseminated herpes and the effects it has on the brain (encephalitis) it seemed to be similar to what I was experiencing. I was off work for months. It was never treated with acyclovir though, as it was during the 4 months my symptoms disappeared. I still take acyclovir again now though and no joy at all, still mild neurological symptoms which change daily, and still hsv2 symptoms which change daily. Except no lesions. I wonder how they can get it out my blood if it's in there? It's obviously not reacting to the high dose of acyclovir I take daily as suppression. I'm so miserable with this saga and there seems no hope with treatment
FelizCastus jenni51978
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Herpetic encephalitis is a medical emergency that can prove fatal, so I seriously doubt you had that, and disseminated herpes in adults is rare. If the latter occurs, it's usually in neonates, pregnant women or the otherwise immunocompromised. The fact your issues are not responding to the meds suggests that the cause is not herpes.
jenni51978 FelizCastus
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I really hope you're right. I'm going to ask my doctor for a referral to a specialist. I'd be intrrrdted in having a pcr blood test done, I'm sure the virus is floating around my body now and not in my ganglion anymore. Will see what they advise
ester80818 FelizCastus
Posted