benzgtx

Thank you for this wonderful post. Just what I need to hear that things will be better, that there is hope and I shouldn't lose the sight of that light at the end of the tunnel.

@SeraLynby all means! I am team hsv1. The funny thing is that I started to have back to back genital outbreaks for 3 months, then immediately after, I got the inner ear involvement manifesting as vertigo. The eyes about 11 months after the first outbreak. And now with the hands and feet about 16 months after the first outbreak. It's just continuing to invade and invade non stop with me being on Valacyclovir 1g daily. Doctors say it cannot be but it's there in the literature and they're just not updated enough on the most recent studies that unveil the true nature of constant reactivation of this virus. I think by now I have a high viral load which complicate things as all of these areas flare together in addition of course to some urethral burning but never classic sores. There are small, single separated ones that appear in the areas of maximal flare up.

@SeraLyn@SeraLyn Hello there.. Hope you are feeling better. I would like to comment that while a single spot on the foot would be less likely but an infection there cannot be ruled out. I know @mr_hoppAdrian might disagree but I have been frustrated with every new outbreak as it continues to involve new areas of my nervous system. The most recent of which being the peripheral nerves of both my hands and feet. Both have been on fire! And these are two new involvement sites and possibly of the worst to have. I have it in my throat, inner ear, more recently hands and feet and I think it has reached my eyes (I developed floaters and flaring during an outbreak) and brain. Herpetic whitlow is a well known manifestation of the virus and it occurs through thick skin as well (typically palms). I hope you are not having a spot that will recur. This virus is evolving. We shouldn't be stuck with the narrated symptomatology of the "usual" scenarios. The rise of resistant strains is evident and resultant "unusual" involvements should be carefully evaluated. By the way.. Do you have have HSV-1 OR HSV-2? Thanks

Thanks for sharing.. I know that merely talking and sharing the subject can bring relief. Hang in there and keep up the good spirit!

It's definitely Herpes! I have the same thing with every outbreak. No chance for coincidence here. Unfortunately I have damage which is floaters and flaring of lights in my vision but my visual acuity is still preserved. Worries me like hell every time I get. Follow with the ophthalmologist please

I would recommend both actually. Relaxation and decrease stress goes a long way in halting the spread and calming down your symptoms needless to say how stress can diminish your immune system and your ability to fight this infection. I would also recommend getting in touch with an interested physician. Somebody who actually care! You could start by contacting the last position you've been in touch with and the one who prescribed your medication. But at the same time try to get in touch with a physician who is willing to back you up during this recovery. Do not wait for long.

Great inspiring story! Very motivational.. Best of luck

Hello... Sorry about your recent diagnosis and sorry that I don't have a clear answer but I have a question please. What was your symptoms that lead to the diagnosis of throat HSV-1? Any hotness? Difficulty swallowing? And over what time course? Thanks

Actually, I do have a question... How am I supposed to accept to risk the life of someone by possibly transmitting such a vicious virus? I know even if that person agrees to take the risk she wouldn't know what she's getting herself into... My quality of living has significantly decreased and I'm only 34...

Hello @kp07 Sorry for what you're going through. Yes, this is an expected feature of the infection as the virus is involving the nerve fibers stemming from the ganglia in the spinal cord and down to the limbs. I have had that feeling. Sunburn like and sometimes feel electrifying/burning. Are you on any regimen? Hope you feel better.

Hello guys, Sorry for the long post but here's my story: I contracted ghsv1 after a single encounter of reciprocal genital stimulation then handling my own private part with my hand and without any direct skin to skin contact (talk about unlikely transmission?). I know this because I only had this sexual encounter in the time that I developed my skin lesion and the lady was behaving extra cautious talking about the need to be tested first prior to engaging in a frank sexual act (something no one ever had mentioned and I have dated medical professionals). Sure enough 2 days later I had one vesicle that stayed in place on the shaft for 8 months being completely asymptomatic until the first outbreak erupted (also atypical and planned parenthood disregarded the possibility of herpes completely) . 6 months later I got a positive IgG of 8.5 to hsv1. Horrible back to back outbreaks for 3 months. 4 months after my first OB I had two beers and went to sleep. Woke up next morning with vertigo for the first time in my life. Resolved in 5 days. I thought it was just benign paroxysmal positional vertigo. 2 months later, same thing, two beers before I sleep and boom vertigo the next morning but this time it didn't resolve for more than 2 weeks. Saw neurology. Had peripheral nystagmus on exam. Done MRI that was normal. Decided that it could be vestibular neuritis and for 8 months after that I didn't have a drop of alcohol. Nevertheless, I continued to have intermittent genital symptoms but more remarkably diffuse irritation of my spinal cord. I could literally feel the virus crawling up. Invading area by area. Until I started to have atypical single vesicles over the back of my scalp and neck. My PCP refused to prescribe me Valacyclovir saying that it's not indicated and refused to believe that I have disseminated herpes simplex infection. I reached out to a friend and managed to get Valacyclovir prescription of 1000 mg daily because I was worried sick. I forgot to mention that I was self medicating with L-Lysine 1000 units twice daily if not 3 times as well as multi vitamins and hoping that my immune system would react appropriately but unfortunately that didn't seem to be the case. Despite being on Valacyclovir I started to develop burning headaches and bilateral eye pain and irritation. I started to have floaters and light flares of cars at night (I still do). Went multiple times to ophthalmology who reassured me that my vision was excellent but couldn't find an explanation for my symptoms. Especially that my symptoms were bilateral they deemed viral etiology to be unlikely. I disagreed all along. Currently on lubricating eye drops for dehydration and they seem to help control my eye irritation but not the floaters nor the flares. Then, 3 months ago return the ear symptoms. I usually had this deep neurotic burning pain in my right ear but now I felt it crawling up my scalp and migrate to my left ear with the exact same symptoms involving the right side of my face as well. ENT and neurology didn't think that it was viral because it's bilateral. Finally, last month, on a beautiful afternoon, I was feeling exceptionally good. We were on the lake barbecuing and I did the mistake of having one bottle of beer. Nothing happened that day. Next morning I woke up without vertigo but my head was a bit heavy. I was happy with the results initially. The next day, I started to have ear fullness and tinnitus as well as dizziness. Went to ENT who diagnosed me with endolymphatic hydrops. That term basically means Meniere's disease but as my symptoms were atypical it would be called secondary endolymphatic hydrops due to hsv1. This is yet to be acknowledged by ENT as I have another appointment next week because my condition is now bilateral! Just perfect. Now I can't have a diet with excess of sodium of 700 mg at time or else my symptoms get worse. No coffee, tea, alcohol, chocolate or smoking. The tricky part is that lots of food low in sodium are rich in arginine and vice versa! Just fantastic! I'm still in a denial, dizzy and listening to my nighttime tinnitus as I'm typing this long post. I have a medical background and I have educated myself very well on the subject. I don't have questions but I do feel shocked, sad and depressed. Herpes is incurable but it caused me another incurable medical problem. I just hope that I will have the power to continue living my life and achieve my goals with the steep uncertainty that I have right now. Hope all is well with you.

@happyman_adventurous You're welcome.. Please keep us posted. I wonder why there is not so many talking about that risk mathematically? I know these are just estimates and would not predict the future but still calls for a plan to mitigate the situation the best we can. Anyway, thanks for making me think more analytically about it and take care

For your question regarding the 1% risk and again I'm calculating over 30 years the risk of transmission is 26 % because 0.99 to the power 30 is roughly 0.74 or 74% of staying safe for that long. Much lower so maximizing protection to get as close to the 1 % risk as possible goes a long way even mathematically speaking.

So I'm not a math guru or anything but I have asked myself this question a lot and was not really convinced with the replies I had read that the risk remains at 2-3% considering rates for genital hsv1 transmission which what I was thinking about.. Anyway, I took 3% as a safer margin and here is what I found by probability calculation ; it's called Bernoulli Process: Let's say y is the risk of transmission per year and it is 3% or 0.03. T is the transmission risk over 30 years. So we're 97% safe each year or 0.97. Let's see how long can we still be safe for 30 years? That will be 0.97 to the power of 30 which is about 0.401 or 40 %. So over 30 years of marriage with regular sexual activity and despite the low incidence per year there's a 60 % chance that your partner will catch the infection. Depressing but this is math: T=1-(1-y)^30 T=1-(1-0.03)^30 T=1-(0.97)^30 T=1-0.40 T=0.60 or 60% Pretty significant unfortunately. I wish it was much less. Hope all is well.

Hello everyone, This forum is by far the most helpful over the web and has been my oasis since the time of me suspecting the diagnosis of genital herpes and until now that I am about 1 year post-diagnosis with HSV1. It surprises me however that we are lacking discussions of how HSV especially type 1 is linked to brain injury and progressive cognitive decline. There is a growing body of research comparing healthy individuals cognitive abilities with regards to HSV 1 and/or the level of anti-HSV 1 antibodies. Consistent conclusions show that there is a statistically significant decline in cognitive abilities (including but not limited to: memory and executive functioning) in HSV1 positive hosts. Some studies were able to show these finding in as little as 2 years duration. Imagine a life-time effect. I have had vestibular neuritis two times after genital HSV1 infection (all within 1 year) and I still feel unsteady and dizzy most days of the week. These symptoms coincide with my "systemic" outbreak where I feel weak, have body aches, and some burning below the waist as well as lower extremity pains. All occur in sync and stop in sync; except for the ongoing unsteadiness versus dizziness. So I clearly have CNS involvement of the infection and it is not a "skin condition" for me anymore. How much more plasticity do my nerves have after these reactivations worries me every day. What troubles me additionally is that we are caught between developing antibodies and hopefully having less symptoms and at the same time by having that more adaptive immune response lose nerve tissue due to destruction by immune response. It is a lose lose situation. As a result, I am reluctant as to start anti-viral therapy versus continue to manage with Lysine and wait for my immune system to adapt? Any input will be valuable.. Thank you!