Trigeminal Outbreak

[DissolvedO2]

Hi – I’ve had herpes on the left side of my face since I was 15 (57 now). I take daily suppressive therapy for genital herpes as well. I’ve been blood tested positive for both HSV1 and 2. For the last decade, it has felt like the virus was migrating through my facial nerve. On July 4th, my scalp on left side of my head became exceedingly painful. Urgent care diagnosed shingles (I have both zostavac and shingrix on board). I took shingles dose of Valtrex for 7 days, started to taper, symptoms came back. My infectious disease doctor prescribed more antivirals and said to drink a lot of water. I need help. What’s my next step? This happened while I was on my daily suppressive dose (and terribly high stress levels). Is there an expert herpes doctor that can give me advice (other than leveling up my nutrition and lowering stress)? I don’t think it’s zoster, I think it is HSV1/2. Thanks for any advice.

[Terri Warren]

I would ask what dose you are taking for suppression. As you likely know, the HSV that you have orally can travel on any branch of the trigeminal nerve to get to the surface of the skin. Right now, it seems like its traveling on the top branch. You may need to be on a higher than normal dose of meds for a while now. Let me know

Terri

[DissolvedO2]

I was taking 500 mg twice a day for many years; after the shingles diagnosis (and two weeks of 1,000 mg 3 times per day and one week at 1,000 mg twice a day), my symptoms come back when I try to go back to 500 mg twice a day. I feel “normal” at 1,000 mg twice per day. I can’t get a doctor here to buy in on that regimen, however. What are your ideas? Thanks! Am I a candidate for Pritelivir or should I buy Amenamevir from Japan? Thanks so very much for your help. I’m so grateful for your work.

[Terri Warren]

That’s quite the dose honestly but I doubt there are problems with that dose. Have you considered doing 500 three times a day to see how that works? or 1 gram then 12 hours later 500 mg? I don’t know how to advise you about the Amenamevir from Japan and can you actually get Pritiliver?

Terri

[DissolvedO2]

I doubt I can get Pritiliver, but scheduled a call with them. My infectious disease doctor thinks the probability is that this is zoster, not HSV, but no diagnosis. She did say it was okay for me to stay the course at 1,000 mg twice per day for a few more weeks. Hopefully this will knock whatever it is back. In the meantime, can you recommend a herpes expert who sees patients? Is there such a thing? And, do you have any thoughts about:https://squarex-pharma.com/clinical-trials/

If this is HSV, maybe boosting my immune system (without tipping it over into autoimmune territory) is a decent approach. I might be able to get a dermatologist to help me with the application. Thanks again for all you do.

[Terri Warren]

Where do you live?
The Squarex thing is very interesting indeed, I am following it. I think applying for the clinical trial is a great idea.

Terri

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