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. 

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7 Replies

  • Posted

    Dear Nick: Last five years I am also suffering.

    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.

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    • Posted

      I would definitely check with your Dr or Physician, I've used several compounds as well as over the counter capsaicin, but my affected area is my back reaching around to my front. The compounds I've used included gabapentin, lidocaine, ketamine, and capsaicin. I was also told by my Dr. that over the counter Abreva can help but I have yet to try this.
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  • Posted

    Thanks Nick, I'm 68 and it's been 8 months now and still feeling enthusiastic about a possible cure although coming to see there may not be. I have it on the right side of the head, nerves on the skin trick me into thinking I've got a bad headache and really there's no difference between being tricked into thinking I have a headache and actually having a headache. It comes and goes 24/7, I'm on Gabapentin (Neurontin) Lyrca, Tegritol and they keep it under control but I'm now a fat guy and zombified. The auto-immune factor interests me and everything related to this. I had a week of chelation treatment three hours per day with IV drip. I feel and look better, no diff with the headache and the weight issue is unaffected. I see what I have to do about the weight, but I'd like to know what you've learned about how the immune systen fights shingles.

    Hope you are keeping well

    ron 

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    • 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.

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  • Posted

    Hi, I noticed that you have had the qutenza 8% patch. I am going to have it for the first time on Monday for my small fibre neuropathy and am really scared. How was your experience and after affects?

    Thanks! Kelly

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    • 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 rolleyes.

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  • 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.

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