PHN for 13 years+ - Genetic issues fighting VSV
Posted , 5 users are following.
New to the group. Had shingles initially when I was 22 years old. Since then I have had chronic pain and tried literally every treatment out there from homeopathic to injections to creams to pills to...everything. I have several doctors that specialize both in pain management but also virology, specifically VSV. It turns out there are some interesting genetic things that can happen with the shingles virus and how your immune system fights it. It looks like my case is unique, but I'm not alone. I have an immunodeficiency to fighting the shingles virus and I've actually been having recurrences of shingles along with PHN. I'm having a massive course of anti-virals along with my normal pain management. If anyone wants to chat about my experience I am more than happy to share as it can be tough when there isn't any relief in site. My latest pain management has consisted of a qutenza 8% capsaicin patch every 2-3 months that provides some relief.
2 likes, 7 replies
ramesh1936 nick37442
Posted
I have tried everything. Is any cream available?
What can I do?
I have pain on my right lip and right tongue?
My speech is also affected.
nick37442 ramesh1936
Posted
ron96331 nick37442
Posted
Hope you are keeping well
ron
nick37442 ron96331
Posted
Sorry for not seeing this sooner! How's the treatment going? There's some great new info out and now there might even be a new immunotherapy regimen I'm looking into.
kelly89056 nick37442
Posted
Thanks! Kelly
nick37442 kelly89056
Posted
It's not going to be easy! Just remember that there is an end in sight because even after it's off, it'll still be hurting for a few more hours. Be careful in the shower as well, the hot water will re-open your pores and reactivate everything. The area will be pretty sensitive and make sure you have some ice handy for a "tiny" bit of relief.
After effects seem to vary for me. I have the patch quarterly, some months are better than others. Over all though, I do get about a 50% improvement for a couple of months and then the pain slowly comes back in full force .
Ash21love nick37442
Posted
Nick,
I need your assistance in helping me find a specialist for my hsv nerve pain issue. I have hsv1 and had chicken pox as a child. I used to get cold sores here and there but ever since 2011, I have had constant nerve pain in my head, neck, ear, and mouth . I do not present with sores. I've seen over 10 doctors and not one has done any genetic testing of any sort or can even remotely explain to me what the problem is. I have been taking 500mg of valacyclovir for 5 years with decent results . However in the last 3 weeks it seems that the valacyclovir is not effective. I've had severe nerve pain now for 3 weeks despite my meds. I am at my witts end. Please help. I don't know what caused my body to not be able to control this virus correctly. I do not have an underlying health condition or autoimmune disorder.