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
jane80952 jenni51978
Posted
For what it's worth, a recent peer review journal article asserted that a great many cases present with those scrapes or fissures. I can't find the citation and don't know the basis for the statement. But it struck me as confirmation by the medical community of my own experience.
jenni51978 jane80952
Posted
I definitely think there's a link, because if we don't have BV or thrush, and we're not using any perfumed products, what else could it be. I had 9 months of that everyday last year, and it would switch daily from one side to another, as in one day only the left, the next day only the right. Skin irritation or bacteria wouldn't do that it would be all over. It's something to do with the virus shedding through the nerves and taking one route or another. I don't know why it took that pattern but it did, and the scrapes were lots of tiny little ulcers joined together, just smaller versions of what I had at my initial outbreak. Do you have the scrapes daily Jane? And for how long has this been happening? Are you on suppr waive therapy? I was but it did nothing. Then one day I woke up and it was like I'd never had any problems it dissapeared for months.
Now it's back but effecting a different area of skin and there are no outbreaks just on and off tingles and crawly feeling. And every second day I wake up quite swollen down there with a mild cystitis feeling (swelling tends to be one side or the other, and just the mucus membrane as oppose to normal skin). The intermittent watery discharge has happened both times too. I know it's hsv2 because when I was diagnosed these feelings were familiar too, I just don't undertand now why they're every day and they aren't suppressed. I heard acyclovir reduces breakouts but can't stop shedding, so it makes sense that I'm not having actual breakouts but still have prodrome. I wonder what is causing this atypical shedding. For such a 'common infection' I think gp's are pretty old fashioned in their knowledge of the virus, it's like they've never read anything on it since 20 years ago and have no understanding of how the virus now effects so many people differently
jane80952 jenni51978
Posted
I had the scrapes a few years ago for the first time. They went away on their own; wasn't on antivirals, thought I had type 1 because I had some big classic oral sores (not typed at that time).
Then nothing for a while. Then during pregnancy, a cracked feeling in lip that I began antivirals for, again assuming type 1. This symptom never completely went away, so recently I discontinued antivirals thinking maybe it's something else. I also restarted Aderall, which I had gone off during pregnancy. Then the scrapes came back down south. I pursued serology and western blot, revealing type 2, not type 1. So I am back on antiviral. The scrapes are mostly gone, but the same prodrome sensations you have are not going away. And now I have had a suspicious rash in the "T" zone of my face and a horribly itchy nose.
In short, the antivirals aren't completely resolving my symptoms either and I'm on a high dose now. For me the big Q is whether Adderall (which can cause acne type skin issues) is contributing to all this and making it worse. What part is the hsv, what part dermatitis, is Aderall making it worse.
I share your frustration with lack of practitioner knowledge. It's a condition that crosses dermatology, Gyno, GI and Infectious Disease. Hard to get them to talk to each other to figure it out.
I wouldn't care if I didn't worry I am more likely to infect someone else-my child or a partner. The symptoms aren't bad enough for me to care about them due to discomfort. Antihistamines help the nose itching a lot, which is the main discomfort. The rest I can feel, but if no one else in the world cared and I couldn't transmit hsv to anyone else, neither would I.
jenni51978 jane80952
Posted
I'm exactly the same, they're annoying but accepting them as a part of life isn't too difficult, other than the fact I now want to have a baby and I'm worried that 9 months of this going on will surely trespass across the placenta and into the uterus. After all if it's strong enough to resist antivirals then it could be strong enough to do that.
What is addrenal used for? I didn't have symptoms for 4 months when I was on some anti-anxiety medication, and as soon as o came off that the prodrome sensations started. But that could be completely coincidental, because last year it came on for 9 months for now reason at all, I wasn't on anti anxiety meds back then.
If antihistamines help your nose, it could just be an allergy to something tho? Even if it's an allergy that triggers hsv, finding the root cause of the allergy might help stop the secondary symptoms of hsv? Have you tried having any allergy tests?
jane80952 jenni51978
Posted
Allergies is a possibility or some combination of issues. I was tested for allergies a while back for nuts and some other things; it was negative. Maybe allergy to something else, but other patients definitely describe itching from herpes - Sometimes only or mainly itching. Will see what dermatology says. Also trying to get Infectious Disease to weigh in. Have heard antidepressants can reduce symptoms but I don't think anyone has studied associations with medication other than antivirals.
I understand your concern; I'm glad I didn't know I had type 2 when pregnant or even breastfeeding. Dissemination and transmission to fetus the way you are worried about would be unusual, I think, and I hope you can consult with someone who can assess the real risk for you. My baby was absolutely fine. I know I had this whole pregnant, because I have only had sex with 1 person since then and he was negative type 2, positive type 1. This all pre-dates my baby...
jenni51978 jane80952
Posted
Last year when I had this for 9 months I had itching everyday, but this time it's milder only prodrome, which makes me think it's still herpes. I sometimes get painful tears between the two skin types if I've had tingling in that area for a while.
I'm going to try and get a referral to a specialist when I see the doctor tomorrow. I'll let you know how i got on.
You don't think it could be nerve damage do you? I was reading that when nerves don't get enough oxygen they can tingle and vibrate because the messages aren't getting through properly
jane80952 jenni51978
Posted
I don't know.
josie70215 jenni51978
Edited
hi there i was wondering if you ever found out if it was herpes causing your symptoms? i was diagnosed november 2016 i have been on suppression ever since in fact i take 800mg of acyclovir 3 times a day the last few month i have either had constant pain or itching down below but not getting any sores im at a point where i feel like coming off the meds just so i get the outbreak in the hope it buggers off. i suffer with nerve pain in my bum and legs i now take 85mg of amitriptyline and 100mg of pregablin a day
Ireadtoomuch josie70215
Edited
Hi there.
This forum sounds all too familiar to me. am having all the same issues and I'm sure it's herpes. Went for a full neuro check, which revealed nothing.
How is the amitriptyline working? I have asked about this as a possible way to relieve the pain.
LongHerpesSimpl jenni51978
Posted
Hi,
I was infected as an infant w herpes simplex 1. I have very bad prodrome myalgia (put it really lightly, I can't get out of bed) and pain and neck & shoulder tension higher than I've ever seen & I used to do massage. I recently realized that the antivirals were causing me massive amounts of unnecessary pain. I've discontinued them after a decade & discovered after having a major breakout that when u allow the virus to take it's natural course and express out of the body, the muscle tension, the pain, brain fog, all magically subside the same day. It makes sense. The same is true for small pox and Shingles. When the blisters appear, the pain subsides & the healing begins. It's like old timey bleeding but for ur nerves. They weren't so quacky as we thought back then. I bet they got that idea from somewhere. Wish I had stopped taking them sooner. Wonder how much damage I've caused. I gave small fiber neuropathy now. Herpes absolutely demyenated my nerves. Can't tell me they aren't related. I can feel it and I was trained in medicine. Seen that Black Mirror Episode where the doctor gets a brain implant that let's him feel his patient's pain. Turns him into a diagnosing superstar. Point being, I can feel it, don't gaslight me and tell me viruses don't do that, it's just a benign skin virus. No, it's a nasty nerve virus that's extremely painful outside the body, why wouldn't it be painful inside the body? These viruses are suspected to be the cause of long covid now. They've not wanted to admit that herpesviruses are causing ME/CFS for a long time. Covid is the best thing that couldve happened to us because now they are being forced to address it. It's not just ME/CFS. Herpes is attracted to injury and stress outside the body. I think it does the same inside the body, finds a weak link and exacerbates it. Go thru the list of diseases A - Z. Most of them are idiopathic. It's 2023 & they claim they still don't know the trigger for almost all disease. It's "the body attacking itself" they claim. No, it's the body attacking a particularly irritating painful invader imo. Look into Alzhiemers and herpes first. When u see the bigger picture and see that herpes is somehow right in the middle of everything (when they actually look) it all makes sense. Also, a cash cow for Pharma. Think about it. Presents different in everyone because everyone is different so it's hard to nail down, in their logic anyways. Look what it took to prove the link between Epstien Barr and MS. Still, another thing they do is treat all the herpesviruses seperately. They'll say, it can't be this particular herpesvirus because not everyone has it, but they didn't test to see if they had any of the others, or all of them, such as HSV1. They often leave that out of their studies and claim no herpes connection. I have HSV1 and tell you that it's just as nasty and the rest of them.