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Hypersensitivity, "creepy crawlies", only rarely sores - anyone else?


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I was diagnosed with HSV2 a few days ago after 18 months of agonising flareups/OBs. The diagnosis is new; living with the condition, however, is old hat for me at this point. This was only my third OB with sores, so they were finally able to do a tissue culture and it came back positive along with serology.

What's weird?

1. Serology was negative until now, including a test in Aug 2010, more than a year after the first OB.

2. First OB had no sores at all, but it was definitely the worst. I had dysuria (burning urination) for 2 weeks, horrible pins-and-needles all over genital/anal region, feeling of moving knots inside my urethra and prostate, and hypersensitivity to touch in my legs that made it impossible to wear pants without severe pain. I smoked weed and got Lyrica from my mom (who has fibromyalgia) to cope with all the different neuralgias. The hypersensitivity lasted more than a month the first time.

3. The OBs are perfectly regular, no matter what I do with lifestyle and diet. They happen every 3 to 5 weeks like clockwork. No less, no more.

4. The only symptoms that recur in every OB are the "creepy crawly" sensation in the urethra and the hypersensitivity in the leg. The creepy crawly comes first, and I understand it is a normal prodromal thing. But the hypersensitivity comes later and lasts usually a full 3 weeks or so. It is always more severe in the summer and when I travel to the tropics for work.

5. The first time I had sores was the OB of June 2010, a whole year after the first OB, when I had a single, half-inch ulceration on my frenulum. The second time was July 2010, when I had more normal, minor scabby lesions. The third time was just this month, after a particularly stressful end-of-semester stretch in school.

6. The nerves affected by HSV are not supposed to extend further down than the thigh, but the hypersensitivity usually goes all the way down to the tops of my feet - usually the right leg but sometimes the left too.

My doctor agrees that not all of this is explained by HSV, but he feels it's about 90%. My feeling is more like 50%.

I am particularly concerned that the HSV might be interacting with EBV. I had mononucleosis/glandular fever 7 years ago and have had intermittent hypotension/fainting spells and bouts of severe alcohol intolerance ever since, plus an episode of pleuritis, which is common in chronic EBV infections. "Polyneuropathy" is also a common complication of EBV (but also of normal HSV, just not with as much of a range in the leg as I seem to have).

But my health plan is shit and my doctor still hasn't ordered serology for HHV3 (chickenpox/shingles) or 4 (EBV) because of the cost and because we "already know" that I have those. (Of course we know! The question isn't whether I have the antibodies, the question is are they unusually high!) And even though I keep asking for a referral to a neurologist, a rheumatologist and/or an infectious-disease specialist, the only referral he writes me is to the urologist. He says I should see the urologist first (even though I already have seen a urologist - one of the many times I got negative results and was sent home like a psychosomatic nutcase) before going to the neurologist, and only after a long history of journalling should I see a rheumatologist. I HAVE a long history of journalling at this point! (Read above for a condensed version.)

If anyone has had a similar progression with or without EBV please let me know! I feel like I'm spitting in the wind trying to get my doctor to grasp my situation. For a whole fucking YEAR I kept seeing doctors who thought I was a hypochondriac because the serology was negative, and now that it's positive they think their work is done! GAH!

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I think it effects all of us in different ways, but you could be onto something with EBV. I had read about other herpes viruses that can deplete our killer T cells. Check do a search on HHV-6. That another one we all have. If these viruses are depleting your t cells, the best you can do is suppresive therapy. Acyclovir doesnt cost a whole lot. I'm on 3 400mg/day and as long as I take it right, all the wear creepy crawly, burning, itching, and sharp pains go away.

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