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sincerity
Member since Mar-19-09
20 posts
Mar-19-09, 06:57 PM (CST)
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"Central nervous system infection of HSV 2 and my experiences"
 
   Hi everyone, I'm new here, and have been really interested to read everyone's experiences. I wanted to share mine - I think it's quite different to most so far.

I do not have a definitive HSV diagnosis, but I'm 99% certain this is what happened to me. At the end of January I was with a man I had been dating for a while for the first time, and as I always do I insisted on using a condom. He took it upon himself to take it off halfway through intercourse (he was swiftly kicked out of my house), and it seems passed HSV 2 onto me. I don't know if it was deliberate, but I really, really hope not.

I started to feel sick about 4 days afterwards. I didn't have any visible lesions at all, but I had mild swelling and discomfort in my genital area. I was concerned, but I developed a yeast infection and became less so.

I started to develope flu-like symptoms - a very sore throat, aching limbs and a very high fever. I became very weak, in particular I suffered lots of pain and weakness in my legs and feet.

I then became constipated, and after a week of not being able to go even with laxitives I began to pass blood from my back passage and I realised it was starting to get difficult to begin to urinate. I also noticed I had swollen lymph nodes in my groin. I went to my doctor, who gave me antibiotics for a suspected UTI and gave me stronger laxitives.

The next morning, I woke up and couldn't urinate at all. I was compelled to urinate, but couldn't make my body release it.

I went to A&E, and this is where 4 weeks of hell started. They catheterized me (horrifically painful as I now know I probably had the beginning of an outbreak in my urethra at the time.) They assumed I was constipated (this can cause urinary retention) and treated me aggressively with laxitives and enemas, none of which were particularly successful.

Eventually I was admitted, seen by the uroglogy teams and general surgery, who could not figure out what was wrong with me. I was catheterized for over a week, undergoing almost daily rectal and pelvic examinations. A pelvic ultrasound showed no abnormalities, and a colonoscopy showed mild inflammation but no serious problems.

The urologists taught me how self catheterize - a process that took about 20 minutes every time I became aware of my bladder being full (about 6 times a day). Amazing how you take natural bodily functions for granted! And, believe me, as a woman it's not an easy process to do to yourself - the female urethra is *tiny* and so difficult to find - I'll leave it to your imagination.

It was then that I developed pain in my lower back (coccyx area) and spreading numbness from that region, in my buttocks, anal area, genitals and inner thighs. When I reported this to the doctors, they finally got a neurologist on board who ordered an immediate MRI.

They ruled out spinal cord compression, and MS. All good. Only then did they suspect HSV had infected my central nervous system.

I had numerous very painful lumbar puncture attempts. Eventually, they were successful and sent my spinal fluid for analysis. They took blood samples and swabs from my vagina and anus (despite the fact I have NEVER had anal sex in my life) to test for every sexually transmitted disease under the sun.

My spinal fluid showed I had 11 times the normal levels of white blood cells, all consistent with a diagnosis of sacral myeloradiculitis, or Elsberg syndrome.

HSV, as we know, invades the nerve cells, and in the case of genital HSV infection this is specific to the sacral region. The virus had somehow infected my spinal cord, and was causing inflammation that had essentially paralysed my bladder and bowel, and left me completely numb from from the base of my spine to the middle of my thighs, with the numbness spreading to my feet. I developed leg weakness and jerking.

All my swabs were negative, I had no visible lesions at any point, my spinal fluid whilst showing I categorically had a viral infection in there tested negative for every herpes virus (EBV, HSV, VZV). My PCR came back negative for HSV 1 and equivocal for HSV 2, so we can only assume that it was an early equivocal result and that it is now positive.

I was given a 10 day course of IV acyclovir for 2 hours 3 times a day. Let me tell you, acyclovir is not easy on the veins as the drug has such a high PH - I could take about 2/3 of a dose before my veins swelled and the pain literally made me scream. I can't believe they have to give this stuff to infants.

I started to improve, but developed the most intense pruritis (itching/tingling/skinscrawling) in my buttocks, thighs, genitals legs and the soles of my feet.

My neurologist prescribed me gapapentin - a neuropathic drug used commonly for epileptics, diabetics with neuropathic pain and amputees with phantom limb pain. For those who are suffering from chronic pain and the itching and tingling, I would highly recommend this drug. It did make me drowsy at first, but quickly had my symptoms under control. The sensations didn't disappear, but the amp was certainly turned down - I was even able to sleep.

I eventually managed to void urine myself after 8 days of acyclovir treatment, and was able to open my bowels myself the day after. Some feeling started to return.

They did another lumbar puncture (again, 4 separate attemps were required) and despite the worst post lumbar puncture headache ever, the results were encouraging. My white cells had dropped to a still elevated but more reasonable level - the acyclovir had worked. Again, no signs of any virus in the fluid, nor again in the repeat swabs they did (I started to feel like the whore of babylon after a while when they couldn't believe I didn't have chlamydia, gonhorroea, trich, syphilis or any other godforsaken illness in any orifice.)

After 28 days in hospital, I got out last week. So today will mark day 50 since my exposure and I'm still not quite there yet.

I have regained most sensation - my perinium and vagina are still quite numb, as are the soles of my feet. It's still a bit painful and difficult to start urinating and I still have severe lower back pain. The itching and tingling is still mostly under control by the gabapentin, but when I tried to come off it, it was almost unbearable still.

I never seemed to develop any lesions at all - not a bump, not a crack, not a sausage. I realise they could have formed on my cervix but I did have an internal examination by a gyneacologist who couldn't see anything at all.

I'm obviously shocked and confused. And terrified that another outbreak will mean another infection in my spine, and another hospitalisation. Nobody has actually confirmed a diagnosis of HSV 2 to me, but we can only assume that's what it was. Nobody knows what to expect - whether I will develop visible lesions next time like most others, whether I won't notice, whether it will just be inflammation and itching or whether I will be so sick again.

I'm not on any anti viral therapy to prevent recurrence. I'm still living with numbness and the horrible skin-crawling sensation in my groin and buttocks. Is it ever going to get better or has the virus just damaged me so much?

I am also obviously greatly concerned about transmitting the virus to future partners, and very angry about the way I contracted the virus. I think living with herpes is bad enough, but the fact is, there was great potential I could have died from it had my neurologist not made the decision to treat me with anti viral chemotherapy without a definitive diagnosis.

I'm not sure what the point of my post is. I think I just needed to document what happened to me, ask if anyone else has experienced Elsberg syndrome as a complication of primary HSV 2 infection, and also make a recommendation for gabapentin as a possible treatment for the chronic neuropathic pain and itching/tingling/skinscrawling nerve problems associated with herpes infection.

That's all for now...


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  Subject     Author     Message Date     ID  
Central nervous system infection of HSV 2 and my experiences [View All] sincerity Mar-19-09 TOP
  RE: Central nervous system infection of HSV 2 and my experiences Scooter Mar-19-09 1
  RE: Central nervous system infection of HSV 2 and my experiences Lenoreadmin Mar-20-09 2
     RE: Central nervous system infection of HSV 2 and my experiences sincerity Mar-21-09 3
         RE: Central nervous system infection of HSV 2 and my experiences Lenoreadmin Mar-21-09 6
  RE: Central nervous system infection of HSV 2 and my experiences lilybrooke Mar-21-09 4
     RE: Central nervous system infection of HSV 2 and my experiences Scooter Mar-21-09 5
         RE: Central nervous system infection of HSV 2 and my experiences sincerity Mar-23-09 7
             RE: Central nervous system infection of HSV 2 and my experiences lilybrooke Mar-23-09 8
                 RE: Central nervous system infection of HSV 2 and my experiences C16679admin Mar-23-09 9
                     RE: Central nervous system infection of HSV 2 and my experiences lilybrooke Mar-23-09 10
                         RE: Central nervous system infection of HSV 2 and my experiences Scooter Mar-23-09 11
                         RE: Central nervous system infection of HSV 2 and my experiences Lenoreadmin Mar-24-09 12
                             RE: Central nervous system infection of HSV 2 and my experiences sincerity Mar-24-09 13
                                 RE: Central nervous system infection of HSV 2 and my experiences Scooter Mar-28-09 14
                                     RE: Central nervous system infection of HSV 2 and my experiences sincerity Apr-05-09 15
                                         RE: Central nervous system infection of HSV 2 and my experiences Scooter Apr-05-09 16
                                             RE: Central nervous system infection of HSV 2 and my experiences sincerity Apr-05-09 17
                                             RE: Central nervous system infection of HSV 2 and my experiences Scooter Apr-10-09 18
                                             RE: Central nervous system infection of HSV 2 and my experiences sincerity Apr-19-09 19
                                             RE: Central nervous system infection of HSV 2 and my experiences C16679admin Apr-19-09 20
                                             RE: Central nervous system infection of HSV 2 and my experiences Scooter Apr-19-09 21
  RE: Central nervous system infection of HSV 2 and my experiences Elsberg patient Dec-19-12 22
     RE: Central nervous system infection of HSV 2 and my experiences starrattadmin Dec-20-12 23
  RE: Central nervous system infection of HSV 2 and my experiences yakima2013 Mar-02-13 24

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Scooter
Member since Sep-27-08
500 posts
Mar-19-09, 07:35 PM (CST)
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1. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #0
 
Interesting post sincerity I was thinking about meningitis this evening as I was driivng home from work. I was mentally whining again about my HSV 2 itching and burning that returned today after a 5 days hiatus. Then I thought - the people that get meningitis as a result of HSV2 that is tough!!

I am not a techie and there will be others along to provide you with technical information. I do encourage you to get an accurate diagnosis - a clear HSV diagnosis. Keep seeking out the experts that can help you. I hope you're feeling better. Hang in there and don't give up looking for an "accurate" answer.


Scooter

"The two most powerful warriors are
patience and time". Leo Tolstoy


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Lenoreadmin
Member since Oct-22-04
4279 posts
Mar-20-09, 08:13 AM (CST)
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2. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #0
 
   Thank you so much for taking the time to share your story and I'm sorry that you had to go through that. As a nurse, I am well aware of the difficulty women have self catheterizing themselves and also of how incredibly caustic IV acyclovir is to the veins.

I'm curious as to the doctors thoughts on why the LP wasn't positive for HSV? Are they recommending that you follow up with a blood test @16 weeks?

There have been posters with urinary retention with a primary herpes outbreak. The neurological symptoms are not uncommon either. Hopefully since you are showing improvement after being so ill, you will continue to improve. Even with a more typical primary outbreak there can be residual nerve pain/irritation for months. What dosage of gabapentin are you on?

If you post a brief inquiry in the technical section, someone like Windy
might be able to supply you with some links.


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sincerity
Member since Mar-19-09
20 posts
Mar-21-09, 09:58 AM (CST)
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3. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #2
 
   Hi Lenore

The doctors weren't particularly forthcoming with information to be honest. I haven't been given any information on HSV, was just told that all my symptoms (genital swelling and pain, swollen lymp nodes in groin, proctitis, neurogenic bladder and bowel, fever, muscle aches and pains, low back pain, parathesia, numbness and pruritis) were so textbook and once they confirmed CSF pleocytosis and I got an equivocal result for HSV 2 antibodies, there really couldn't be another more likely diagnosis, and I agree. So I've had to research it myelf in terms of figuring out how to deal with it.

As for why the LP was negative, I really have no idea, but I do understand that it's a slippery sucker to nail and they mentioned before the results came back that it could have either been too early or too late to detect it. They haven't recommended any follow-up tests except a repeat HIV test in 4 weeks. I will be asking for a repeat HSV 2 blood test at this time, too.

I'm on 100mg gabapentin in the morning, 200mg in the afternoon and 300mg at night as my symptoms seem to get progressively worse throughout the day and particularly bad overnight.

Thank you for the recommendation to get technical advice - I'm going to think through my questions and do just that.


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Lenoreadmin
Member since Oct-22-04
4279 posts
Mar-21-09, 07:48 PM (CST)
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6. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #3
 
   It sounds to me like the symptoms add up to HSV. I was just curious what the doctors said about the LP and curious if they felt there were other viral illness that could cause the symptoms.

I was very sick with systemic symptoms during my primary 30+ years ago. I had a fever, fatigue, muscle aches and the worst sore throat of my life, but only one large blister on my labia. It was pretty easy to ignore the blister since I was so sick otherwise, so my experience leads me to believe that you don't need a lot of sores to have herpes.

I've taken care of hospitalized patients with viral meningitis who were on IV acyclovir and it was impossible to run it slow enough so it wasn't painful and we were constantly restarting IV's. I even had a patient with a PICC line who had so much pain that we thought she had a blood clot. The only neurological symptoms any of these people had was a severe headache.

I've had diabetic patients taking way more gabapentin for their neuropathy. I'm glad it's working for you.

I was wondering if it might make sense to take oral acyclovir at the suppressive dose until things start to get a little more normal for you. You also might try using the search engine, particularly for urinary retention since that seems to be fairly common with primary outbreaks.

Thank you for taking the time to answer my questions.


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lilybrooke
Member since Aug-30-08
408 posts
Mar-21-09, 10:44 AM (CST)
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4. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #0
 
   I am just horrified and don't know what I can offer, except a sympathetic ear and some information. I am still in shock over your description of acyclovir's effect on the veins.

First, you can be certain your misery was/is due to hsv2. Herpes and its potential complications, sacral radiculitis/Elsberg, transverse myelitis, meningitis, to name just a few, is all over medical journals. Documented and proven cause and effect.

I sent you a note via a PM. I hope it makes you feel less alone, at least in terms of the urinary and bowel problems (even now, I might have one "normal" bowel movement every other month). Feel free to reach out if you need to.

p.s. To access PMs, go to the main page ("Conferences"), click "User Menu" and you'll see "Inbox" on the left.


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Scooter
Member since Sep-27-08
500 posts
Mar-21-09, 06:31 PM (CST)
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5. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #4
 
That was sweet Lilybrooke and you can certaintly identify with Sincerity. Just thoughts - the week before I left for Denver I was having a lot of itching a pain and insomnia. I think the insomnia is a result of pms - rigth before my cycle. I decided to take a half a klonopin, which I hate taking because it makes me groggy the next day. But ALWAYS after I take it I get a few days of relief from the amped up itching and burning.


Klonpine is known as a benzodiazepine. Benzodiazepines (ben-zo-die-AH-zuh-peens) belong to the group of medicines called central nervous system (CNS) depressants. These medicines slow down the nervous system in your body. Benzodiazepines may be used to help keep you from being anxious or nervous, control seizures, or decrease memory of a procedure or treatment. They may also be used to decrease vomiting (throwing up) caused by medicines (such as cancer treatments), control tremors (shaking), or relax muscles. The benzodiazepine that was prescribed (ordered) for you was meant to be used for a specific purpose.

I was discussing this with my pain mangement doctor. We know that this virus is kicked up by adrenaline/stress. So it makes sense that it would quiet the virus down as it atatcks the sensory portion of your nerves. This virus is an enigma in many ways but I had 5 days of peace - not perfection - after taking it. I also read where a person had phn (post herpetic neuralgia) after they contracted HSV took klonopin for 3 months and the phn went away.

DO CONSULT YOUR DOCTOR because of the severity of what you are going through and drug interactions. I was just thinking of how I could help you and your feeling worse at night. What you are going thru is extremely psychologically and pyhsically stressful!!

I remember when I was there - the itching was SO SEVERE and mentally I was worried about my health, my job, was I going to be okay, would I get thru it, what will my future be like. I had two painful biopsies in my vaginal area - talk about hurt like hell because I could not figure out why I was itching SO BAD!! I would go thru cyles of "I have to take a leave of abcense I'm mentally losing it" that was a theme for six months. The nerve jolts - feel like you're being electrically shocked, hurt like hell, and were really distracting. Try and look normal at a desk job!

I have a dear friend who would talk me thru the really bad times, I would take a break from work and sit in my car and just sob. I did this for 3 months because I was so sick. Cognitively the valtrex made me dizzy and discombobulated. I would change back and forth try the Famvir go back to Valtrex, switch to the acyclovir. At the time I believed that Vatrex was the superior drug beacuse that's what I kept reading. Some people respond to one drug better than the other.


The klonopin has helped me a lot and might help you get more rest and feel less of the chronic stress you're under right now. I wanted to share that in hopes it might help decrease your suffering.

Godspeed


Scooter

"The two most powerful warriors are
patience and time". Leo Tolstoy


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sincerity
Member since Mar-19-09
20 posts
Mar-23-09, 03:45 PM (CST)
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7. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #5
 
   LAST EDITED ON Mar-23-09 AT 04:50 PM (CST)
 
To Lenore - no problem, thanks for taking such an interest. I do hope I won't require IV acyclovir again, as it was pretty horrific, but it certainly helped so if I do, I do.

The neurologist suggested there could be due to a primary HIV infection, too, but that this was highly unlikely and the symtpoms were less typical and it's doubtful I would have responded so well to IV acyclovir if it was HIV,though I have been instructed to take a repeat blood test in 4 weeks for this to make sure.

Lily - hello, and nice to hear from someone who is experiencing similar problems. Thank you for your PM - I'm going to respond to you once I figure out how to get back to it! Something you may find interesting since you have a "below the waist" infection but have "above the waist" neurological symptoms - I've never had an oral infection and tested negative for HSV 1. BUT, I have (recently) been experiencing tingling in my face and scalp (mouth and nose and chin mainly). Today, I have developed quite severe parasthesia in my arms and hands - it is bilateral, but the symptoms are much more severe in the left hand (I can't pick things up). This sounds very much like the kind of symptoms you have been suffering and could indicate that if a genital HSV outbreak infects the central nervous system, the virus might infect other nerve groups and not settle only in the sacral ganglion.

Now, part of me thinks, ok, you were a whole person and whole body before this, you can't attribute every symptom you may pick up in your life to this thing. Still, ANYTHING to do with my nerves this soon, I just can't ignore. Could this problem be spreading to my trigeminal and cervical nerves? I also seem to keep getting goosebumps like I'm cold, but I actually don't feel cold. Is it even possible it's HSV related? The tingling in my face isn't severe at all, but it's been there for about a week now. I called my GP who told me to go back to the emergency department at the hospital, but the thought of having to walk back through those doors just terrifies me. It's so strange that I don't have a specialist looking after my case, too - I won't have a neurology appointment for 4 months - who the hell do I talk to about the onset of new symptoms? And I'm starting to think multiple sclerosis, even though I had an "essentially normal" MRI. I did have oglioconal bands, which are indicative of both systemic inflammatory response due to a viral infection, but also to autoimmune disease.

I'm going to ask about benzodiazepines, Scooter - I think this could be a good way forward for me, though with onset of new symtoms and new nerve groups affected, I think my doctors might be looking at an alternative diagnosis, even though I'm so certain this is HSV related.

It's all just SO. WEIRD.


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lilybrooke
Member since Aug-30-08
408 posts
Mar-23-09, 05:21 PM (CST)
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8. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #7
 
   Sincerity, you are not going to like this, but I have all those symptoms you describe, and I've posted about most of them, including facial neuralgia (extending to ear and neck, although it's possible that's from my surgeries), paresthesia (full body, but so far not all at once, and definitely not from my surgeries), and the exact same problem of occasional inability to pick things things up due to nerve weakness/malfunction, only it's worse in my right hand (in fact...the weakness in that hand is so severe at times that I can't even wipe or dress myself. When that happens I use my left hand, slowly and clumsily). I actually saw an acupuncturist about it this morning because western medicine has done diddly for me so far. I've told my rheuma and he just shakes his head. Not that I'm expecting much improvement from a drug much less from a couple of acupuncture needles.

In addition to monstrous shooting nerve pain below the waist, I experience it in my upper body as well, mostly arms and hands (elbows to tips of fingers and worst at the wrists), burning like the feeling of cigarettes being put out on your flesh or buckets of ice tossed onto your flesh (usually on the undersides of my forearms on the "softest" part of my flesh), throbbing, aching, and weird "bone pain" (it's not bone pain literally, it's nerve pain, but it feels like bones), and sides of my torso. I actually "welcome" the tingling and prickly sensations; they are so much easier than the terrible pain. It's the same shooting, searing nerve pain that affects my lower body. And it's all hsv2.

I have full body nerve twitching visible to the naked eye. My vagina, vulva, foot, face, torso, buttocks, to name just a few locations. I remember in late 2007 before I knew this was herpes and before my symptoms really took off, my left foot twitched so furiously (the inside length of my foot between the big toe and the heel) I had to hold it down with my hand.

My symptoms do seem worse on my left side and I think that's the side I was initially infected on.

By the way, I was infected on KERATINIZED skin which is technically much safer but didn't work for me. I was using a condom and there is no way I could have been infected on mucosal skin unless I missed an active ob on his penis and the act of unrolling the rubber and putting it on got some virus on the outside of it. I remember checking that rubber for leaks, too, before dumping it.

I'm sure my cervix twitches and I just can't feel it. I have cervix obs. Curious to know if you remember experiencing watery discharge?

No, for some of us, the infection is NOT confined to the sacral ganglia and that's what conventional medicine has yet to pick up on. Another girl that used to post here had some interesting info/articles about how they are finding hsv everywhere in autopsies of dead bodies even in the absence of systemic infection. I need to read up on that. I swear to god, they must be willfully blind to this hsv infection of so-called "distant locales" because there are so many people on this forum who have the occasional upper body symptom. I guess if they admitted this could happen, they'd have to (gasp) try to figure out why. Granted most anecdotal reports of upper body nerve pain aren't nearly as severe as mine, but there are enough anecdotal accounts to shed new light on this disease.

I have sore throats, fevers, chills, and sweats with almost all my recurrences just as I had the flu. Maybe one out of 10 times I can hit it with enough antivirals and cimetidine to shut it down before the core body temperature rise but usually I have to suffer through it.

My PM links you to some of my older posts which describe my episode of EXPLOSIVE (and I truly mean EXPLOSIVE...think...atomic bomb...or a meteor) pain and the inability to pee or poo.

I also did not have preexisting ohsv1 which probably contributes to the severity of my hsv2 symptoms. I tested negative for hsv1 but the HerpeSelect is notoriously insensitive at detecting hsv1 infection. However, since my ghsv2 symptoms escalated, I think I now have ohsv, and it is probably type 2. I have these subclinical episodes with extreme tingling and itchy, fiery, burning red bumps at the vermilion border and facial nerve pain. How I got ohsv from myself is a mystery but I didn't give oral sex to the guy I got the ghsv2 from so it must be auto-inoculation or the virus traveling to and infecting other nerves.

But I'm still holding out hope for "something wrong with the airport and not the planes" (to quote Windy's theory) in that hsv2 has caused a temporary and slight malfunction of the nervous system instead of setting up residence in other nerves.

Probably WAY more than you wanted to know, right? I understand if it is information-overload. The best thing you can do right now is try to assemble a medical team to help you and have some people close to you that you trust to support you, and rest. But hopefully, you won't need much help.


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C16679admin
Member since Aug-29-06
9733 posts
Mar-23-09, 08:22 PM (CST)
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9. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #8
 
   Lily, I'm just curious why you think keratinized skin was infected. I mean, the condom obviously only covers so much and perhaps he was shedding, which could have been from the scrotum or pubic area...I thought that was the point of condoms not being 100% effective.

Not that it matters with regard to your story, but I just would have thought, oh the condom doesn't cover everything and you still ended up being infected genitally...am I missing something?

C.


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lilybrooke
Member since Aug-30-08
408 posts
Mar-23-09, 08:47 PM (CST)
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10. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #9
 
   LAST EDITED ON Mar-23-09 AT 08:53 PM (CST)
 
To put it plainly, he had an extremely small dick...tiny, seriously, it wasn't one of those situations where he was hung like a horse and the condom was inadequate or something. The condom came all the way down to the base of his penis with lots of condom to spare, I watched him unroll it, put it on and made sure it was on right and making sure his nails didn't nick the condom or anything, and it stayed on that way the entire time which was all of maybe three minutes. I remember checking if it was on and checking its integrity after the deed. I'm very careful about these things...all that care for...for...for...(wait for it!)--herpes!!!

Sure, he was probably shedding, but if he was shedding from a non-covered part, then due to the position I would STILL have been infected on keratinized skin. I wasn't doing unprotected back door love or anything even remotely approaching "unorthodox" or "crazy."

But you're right, I COULD HAVE been infected on mucosal skin. Though if I had been, you'd think I'd have had A SORE on my vulva at some point. Or some redness, or SOMETHING even vaguely resembling a classic ob. After all, the vulva is where most women typically get infected and have their obs.

I was infected on keratinized skin, which gave me an easy and soreless primary and several years of nothing, BUT when I got the hpv, my cervix was weakened, I started having obs there (even though I wasn't initially infected there), which led to infection of other nerve cells...and you know at least some of the rest of the story.


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Scooter
Member since Sep-27-08
500 posts
Mar-23-09, 09:25 PM (CST)
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11. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #10
 
Lily you have really picked this apart bless your heart. I can so relate!

Sincerity, can you get in with neurologist sooner? I was talking to my girlfriend about your situation and she mentioned Guillian-Barre Syndrome which she has in conjunction with Lupus. Just food for thought.

"The two most powerful warriors are
patience and time". Leo Tolstoy


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Lenoreadmin
Member since Oct-22-04
4279 posts
Mar-24-09, 09:05 AM (CST)
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12. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #10
 
   I think what C was trying to say (and this had occurred to me also) is that his scrotum isn't covered with a condom and there was contact between your genitals and his scrotum. I know this is kind of a silly thing to focus on with everything you've gone through. Obviously, you've put an incredible amount of thought into this.


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sincerity
Member since Mar-19-09
20 posts
Mar-24-09, 01:25 PM (CST)
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13. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #12
 
   Hi ladies

I'm trying to get in touch with my neurologist, but unfortunately it's just not that easy over here. Because I was discharged under the care of my GP everything has to be directed through him, and unfortunately he's totally unsympathetic. I called again today and explained I hadn't gone to the emergency department as I don't believe my situation warrants emergency medicine, but asked his advice in terms of obtaining a neurological appointment sooner. He said, "my advice is come and see me - it's clearly not that urgent."

So I try not to waste hospital time... Argh! So I have an appointment to see him tomorrow, where I may well give him hell about coming to see him and him dismissing me as a neurotic woman with a UTI only for me to end up in hospital the next morning where I would stay for a month. He owes me something for that!

They did investigate Guillan-Barre - my oglioconal bands are consistent with systemic inflammatory response OR neuropahties by autoimmune disease OR neoplastic or paraneoplastic syndromes, of which Guillian Barre is. States it's unlikely to be Guillian Barre or MS, but I will be asking for more investigations with the onset of new above the waist symptoms.

I think since I DID respond to acyclovir and all other symptoms were so perfectly HSV, my gut tells me it's not anything else.

As for being infected on keratanized skin or not - I understand it's more difficult (hense why transmission from women to men is more difficult, particularly in circumcised men whose glans has become keratanized due to years of exposure to air and friction) but I was most certainly infected on mucosal skin and did not have any lesions. I just had inflammation, which without everything else I could have passed off as irritation from a yeast infection. I didn't have any cervial lesions visible in an internal exam with a speculum and I didn't have the greyish-watery discharge. I did, however, have inflammation in my rectum and bowel - I had a sigmoidoscopy while in hospital which showes focal avtive colitis, probably due to infection. Not ulcers, but inflammation enough to cause quite a lot of rectal bleeding, mucous and pain whenever I DID manage a bowel movement with copious laxatives. I didn't have anal sex with him, but clearly the inflammation in my vulva and vagina spread to my anal region and further into my colon. Nice! I had an outbreak inside my intestines.

Obviously, this was my primary, and I'm sure everything I'm experiencing now is PHN. Who knows what I can expect from a recurrence? The same? A more typical outbreak?

I think focusing on how you got it is a totally natural process. Especially when you don't have answers of what's going on with your body and how to deal with it, when and why you got it are about all you can try and figure out for sure.


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Scooter
Member since Sep-27-08
500 posts
Mar-28-09, 11:08 AM (CST)
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14. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #13
 
Hi Sincerity,

Can you possibly see another GP - ugggg! How does it work in the UK with socialized medicine? I see some other folks have helped you on the support forum. How are you feeling? Did you request your medical records?

I started the gabapentin last night. I re-read your post thanks for the dosing information. I need a break from this nerve pain. If I can just amp it down that would be great. Keep me posted on your HSV test when you get it. I think I will re-test now. I was going to wait until my 2 yr anniversary in October. I've had some weird outbreaks the last few days and would feel better with some reassurance.

"The two most powerful warriors are
patience and time". Leo Tolstoy


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sincerity
Member since Mar-19-09
20 posts
Apr-05-09, 11:52 AM (CST)
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15. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #14
 
   Hi Scooter

Sorry it's so late on the reply - I took some time to get looked after by my mum. Sometimes nothing else will do.

I can change GPs, but I don't know how much that will help. He's starting to get on board, but only because he thinks I've got MS and feels a bit smug that he's "diagnosed" it when the neurologists didn't. I maintain that's not what I have. He has requested my lab reports from the hospital as per my request and I'm waiting for them. There's an awful lot of red tape to get through to actually get hold of information about yourself here! They tend to assume you're a moron.

Still waiting on the repeat HSV test - I reckon another 2 weeks should do it.

How are you getting on with your gabapentin? My nerve pain/tingling seems to be subsiding somewhat, especially in my face, though I'm not sure if I'm having another genital outbreak right now - over the weekend I've had some intense sharp pains in my urethra and vagina, along with itching and some pretty impressive swelling, but no visible sores. I just don't know if I can face another internal examination, but I'm going to try and get one done at a sexual health clinic this week. I wonder what it's like to get to go to the doctor's and keep your knickers on?

Hope you're doing a bit better.


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Scooter
Member since Sep-27-08
500 posts
Apr-05-09, 05:40 PM (CST)
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16. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #15
 
Hi Sincerity,
I was going to send you an e-mail I'm glad you posted. Do keep me posted on what they find out. I was going to say you could see an OBGYN but mine hasn't been all that great with this stuff. Maybe you can get a "female" doctor - yeah, yeah that sounds like a good idea

The gabapentin makes me loopy and dizzy so I take it at night. I lowered it to 100mg, not much, but my objective is manageable symptoms which they have been the last few days so that's good.

I hope you enjoyed time with your Mum


"The two most powerful warriors are
patience and time". Leo Tolstoy


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sincerity
Member since Mar-19-09
20 posts
Apr-05-09, 06:15 PM (CST)
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17. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #16
 
   I would have to get a referral to a gynaecologist from my GP and that would take probably months, so a quick trip to the sexual health clinic is as good as it's going to get to try and diagnose an outbreak if it is one! I don't mind. More total strangers can stare at my important bits.

The gabapentin made me dizzy and really, really drowsy at first - especially with my larger afternoon dose. But the side-effects actually totally went away after I built up a kind of tolerance to the drugs, and now I can even drink alcohol with them without any ill effect. Stick with it - your body should get used to it. Glad your symptoms are manageable at the moment.

I got my neurology appointment through for July - that's not going to be particularly helpful, really. Hmm. Ah well. I'll keep pushing.

Christ, how do people with ongoing problems from HSV who DIDN'T have a central nervous system infection get any help around here?! It's crazy.


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Scooter
Member since Sep-27-08
500 posts
Apr-10-09, 09:49 PM (CST)
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18. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #17
 
Sincerity,
How are you keeping a job thru all of this? I can see now why people want to keep health care private. It is better to be able to "pick your doctor" I guess. Gees just sounds like you have been thru a nightmare when it comes to getting medical attention. A lot of red tape.

I discontinued the gabapentin. It's just too much right now. Maybe I'll try it again at some point.


"The two most powerful warriors are
patience and time". Leo Tolstoy


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sincerity
Member since Mar-19-09
20 posts
Apr-19-09, 04:56 PM (CST)
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19. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #18
 
   Scooter, I'm not keeping a job through this, unfortunately, I was made redundant. Well, on the plus side, it' s one less thing I have to worry about!

Sorry the gabapentin didn't prove worth it for you. I understand, it can make day-to-day activities pretty difficult.

Being driven mad by nerve activity today. My 3rd period since this all happened has just arrived. First one was amidst the hospital hell, second one was just after I got out and didn't seem to pose a problem, but this once seems to be causing a major exacerbation. No ulcers, but has seriously turned up the amp on the nerve pain and is causing raging, raging tingling in my thighs, buttocks and genitals, and less so in my face and scalp, and also (it seems) on my torso. Gabapentin isn't even touching it. Tingling can't even describe it - it's like itching and tingling and skin-crawling and vibrating and electric shocking... Urgh!

But, I can urinate and feel my lower body! This is a good thing.

Waiting to see if I end up with any "typical" symptoms. I had swelling and pain for a while before and wasn't sure if that was an internal outbreak... I think I just second-guess this thing every day. In some ways I'm begging for an ulcer, because all I *seem* to get is inflammation and more questions.

Repeating the IgG next week though.


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C16679admin
Member since Aug-29-06
9733 posts
Apr-19-09, 06:40 PM (CST)
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20. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #19
 
   If it turns out that your period is going to exacerbate your HSV symptoms, you might consider suppressing your period by taking one of those birth control pills that lets you take them all the time and then only take a break once a quarter or so, so you only get a few periods a year instead of every month.

Sorry you're feeling so badly right now.

C.


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Scooter
Member since Sep-27-08
500 posts
Apr-19-09, 07:49 PM (CST)
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21. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #20
 
I am so sorry you're going through this. Are you taking antivirals? Are they helping at all? My H is the worst right after my cycle the week I go back on BC. I like to stay on traditional bc because it works better for my body.

Keep me posted on your Igg after 72 weeks mine just came back .91 and I was shocked. Get lots of rest my friend. When I'm really stressed or anxious over H I take Xanax or a 1/2 of Klonopin it takes the edge off and helps me sleep.

Scooter

"The two most powerful warriors are
patience and time". Leo Tolstoy



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Elsberg patient
Member since Dec-19-12
1 posts
Dec-19-12, 00:19 AM (CST)
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22. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #0
 
   I am in the first month of being diagnosed with Elsberg Syndrome. Was comforting to read what you went through above. Similar to my experience but mine was less severe. However My feet, back of legs, groin and butt area are all still numb tingling and quite uncomfortable and I am starting my 5th week of this. I am constipated although the nerves have kicked back in to pee. This is driving mr crazy! I do have the drug you describe from neurologist. I have a gynecologist and neurologist who tell me not enough material out there to predict how long to recover. My question is to sincerity in 2009 in post above is how long did it take to recover from this virus? Also did you have a reoccurrence and if yes how bad was it? I hope you reply.


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starrattadmin
Charter Member
2023 posts
Dec-20-12, 06:53 PM (CST)
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23. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #22
 
I don't think we've had any posts lately from "Sincerity 2009" so she may not be aware that you have inquired about her well being. So please don't take it personally if she doesn't reply.

Neurological disorders are pesky in that every patient's journey is different (as in really really different) and it can take quite a while to sort out what are going to be ongoing issues versus issues that clear up on their own. I am relieved to hear that you are starting to show signs of improvement and hope your recovery goes well.

Be well,
Lorraine

Hoe eet jy 'n olifant? Bietjie vir bietjie.
(Translation from Afrikans: How do you eat an elephant? Bit by bit.)


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yakima2013
Member since Mar-2-13
7 posts
Mar-02-13, 09:08 AM (CST)
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24. "RE: Central nervous system infection of HSV 2 and my experiences"
In response to message #0
 
   I have had a lot of relief using viradux-AU. I hope this helps!


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