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not diagnosed yet, but 99.9% sure

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Hey everyone,

Just wanted to share my story. While I've not yet been officially diagnosed with herpes, I'm damn sure thats what I have. After unprotected oral sex w/ my partner who gets frequent cold sores, I had a majority of the classic symptoms-- lymph swelling, redness, discharge, itching, tingling legs/butt. I cut this outbreak short after 10 days wtih famvir, but it came back a week later :/

Since then, I've had very very frequent OBs, though they aren't "terrible" or anything, they are definitely annoying. In the past few months, I started experiencing INTENSE right lymph swelling. I thought it odd that this would start up like a year after but anyway, it started gonig down and I had some vaginal issues- redness and soreness on one side (the "usual" side). I jsut went and got that swabbed (PCR). The next day, I started getting really crazy tingling in my legs and butt. The day after that, my perianal area started to hurt and I went to the DR today and he said there are two "cuts" there. Big surprise.

Anyway, I know my symptoms are very herpatic. I've had multiple blood tests- of which, all my igGs have been negative (even a year later) but I've had 4 positive IgMs. What I think is going on is that, since I'm on replacement corticosteroids for a medical condition, its not allowing a igG response.

Just wondering if anyone has had issues like mine...especially w/ the rectum. Do you think I had the really bad lymph swelling and leg tingling because its in a new area so it almost was acting like an initial OB?

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Hi jabele,

I'm sorry you haven't gotten a response but I too was wondering about the effects of steroids and testing. I had a cortisone shot for tendonitis about 2 months before I thought I might have contracted HSV. I assume it is different than taking an oral dose of corticosteroid meds. The shot didn't relieve the pain from the tendonitis so approximately 6 months after I thought I may have been exposed I was given a prescription of Methylpred. While reading the drugs side effects I read that using it could impact results of blood tests for as long as a year and I too worried it might not allow production of HSV antibodies so I never took them.

I never did have classic HSV symptoms and my IgG results at 13 months from possible exposure are still negative. I had what started as itch and cuts at the anus which progressed to intense itch, redness, swelling and more cuts in the folds of the vulva.

I experienced those symptoms for 6 months straight and at 2 months from the onset of this I was prescribed a yeast treatment and things started healing, even though every yeast test came back with negative results.

This all started the beginning of October last year and finally about mid April I no longer had all the redness and itch but still developed some cuts now and then, usually during sex. In June I had some red spots appear which cleared up within 3 weeks with nystatin cream. I used it from the start of treatment and it gave me immense relief from all the symptoms I had been experiencing. Word of warning, if what you have is herpes then cortisone creams are not recommended so do not self treat.

I too was convinced it was HSV but so far I test negative. I haven't had any issues since July and I hope it stays that way. Maybe what you are experiencing isn't HSV. I assume, even with the use of corticosteroid meds, that if it is HSV, eventually a PCR test will detect it. It is important that you also not use any topicals on the area for quite some time before being swabbed, these can interfere with results also.

I do hope you get some answers because I know how frustrating it is. I never did get a diagnosis which is why I keep testing. My gyn does say that there are some things that they just can't find answers for.

Good luck sweetie and let us know how it goes.

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Helied2me- thanks for your kind reply.

So, to provide an update on my ever-confusing situation, the following has recently happened. A few weeks ago, after my period, I started having itching and tenderness issues on one side of my vagina -very similar to the other problems I had had with this in the past. The next day I immediately went to the clinic to get cultured. I had hoped they did the PCR DNA test because I know its better but they didn't. The dr. who looked at me didn't see anything, but some redness and inflammation but did a regular culture anyway. The next day, I went to see an Infectious Disease Specialist so I could get a PCR DNA of the area.

The next day, I started having intense tingling in my legs. It lasted for at least 7-8 hrs and I felt really really really exhausted. The next day, after going to the bathroom, I started feeling some pain and irritation in my butt. I tried to look but couldn't see much...but it looked red. The next day, it felt like there were fissures/cuts. I went the following day (2 days after it started), and the NP I saw said it looked like fissures and prescribed an antifungal cream. I also made him culture the area.

All 3 cultures (2 cultures and 1 PCR DNA) were negative for herpes. What a relief.

But then I realize that my symptoms were really herpatic and I know cultures suck. On and off I keep having lower back pain, leg tingling and butt pain. My butt has been itchy on and off and once the first 2 fissures cleared up a new one popped up. For the past few days I have no anal symptoms but am still having the back pain and tingling.

I just don't know what to make of this. My symptoms seem like herpes, but I've had all IgG negatives with negative cultures and repeat IgM positives.

I'm at a loss.

I think I'm going to try to get the WB, but I dont know if that will clear anything up for me...:/

My significant other refuses to believe I have herpes because of the tests and cultures, but its been really hard not to think thats whats still going on. Its just been a really lonely year....

Any thoughts, comments, or even just hellos would be wonderful

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Ultra Violet

I don't really have much to add sorry. Sounds similar to the symptoms I had (anally). I hope you have some relief soon!

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Relax, be patient!

It looks like you have something other than herpes. There are a lot of skin irritations that can seem like herpes.

One way to pin this down is by getting the blood test but it is not accurate unless you get it at least 3 months after exposure/infection.

So meanwhile, try not to stress because stress makes herpes and many other diseases, worse. Use protection during sex and try to enjoy life. Eat right, drink plenty of water, take vitamin C etc. Then, after the 3 months are up, get the blood test. The blood test will pin down the diagnosis better and will also tell you if you have hsv 1 or 2 assuming you do have herpes. Or it will rule out herpes entirely, at least one step toward figuring out what you do have.

One comment on swab tests: They are best done at the height of an outbreak. So if you have another one, have it at the height of an outbreak during a time when you are not taking any antiviral meds.

Good luck! And let us know how it's going. A lot of people here have suffered through the uncertainty before diagnosis (or, in some cases, before finding out they really did not have herpes) so just hang in there and eventually this whole situation will become clearer.

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