Bizarre Symptoms-overlapping outbreaks?

[NervousMonkey]

Developed second cold sore ever in December. A couple days after the cold sore seemed finally under control, I noticed what seemed to be a small pimple/blister right under the head of my penis. No prodomal symptoms, but it looked a bit odd after a few hours it started itching immensely.  My right eye also started to hurt at the same time.  I went the next morning to an urgent care Dr (this was new years eve) who said "I'm not sure. Could be a rash or pimple, could be herpes" and put me on antivirals for a week. Orders a blood test but no swab (which seemed odd at the time as I'd told her I'd had a cold sore). She thought the eye was likely nothing but irritation. The itching stopped after a couple of days, and while the eye was more irritated the next day...including some unusual jabs of shocking pain 3-4 times, but went away entirely after that. I saw my primary Dr on the 4th, and he stated that the pimple just looked like an infected hair. Blood Test showed pos for HSV1 neg  for hsv2 as expected.  Penis gets somewhat itchy red around foreskin at this time, dr suspects fungus.  Itching clear up on it's own,  I have sex with my girlfriend a few days after the pimple fades entirely. Immediately after sex,  my penis begins itching very badly. Itching gets worse over the next day, and when examining myself I can tell there's an odd rash in the folds of foreskin. I go into see local urgent care (as this was late saturday) and was told that it could be dermatitis or it could be herpes. She takes a culture, which comes back negative.  My primary dr thinks it may just be a friction burn or dermatitis. A week later, it is raw and sensitive (looks like part of the skin is almost rubbed off).  There are a few bumps, but they don't look like blisters. Questions: Can I trust these negative results? If it is Herpes, is it likely HSV1? Anything else obvious to check? Can you have two outbreaks back to back like I describe?

[russty]

Hey monkey man! I think we've been travelling the same road??? I'd like to talk to you about how things are "GOING"? I to continue to test negative at almost 2yrs!!! but have all the buzzing,tingling,low back pain,eye symptoms etc.... I cannot get any medication, let me know what that LANCET 2007 was about?

[Terri Warren, RN, Adult Nurse Practitioner]

OK, glad you saw your derm.
This will be the last post on this thread.

Terri

[NervousMonkey]

Thanks Terri- Just in time, actually, I saw my derm with your article in hand, and was started on suppressive valtrex for 3 months just to see. The nerve symptoms had been worst over the last 3 days, today pain was noticeably less...and I noticed 3 red circular dots on the head of my penis, look like early stage blisters but no fluid...so, here's hoping. Honestly, it'd suck but with the list of things it could be, I'd prfefer something at least treatable....

[Joe239]

This is incredible! I have been experiencing some of this nueralgia as well. In all the test Ihave taken they have been negative including a WB at 13 weeks and a hs immunoblot at 15 weeks. I keep getting burning, and shooting pains in my tailbone, lower back, buttocks and thighs even down into my calves. Everyone I talk to say this is not herpes. I have never had these pains before being exposed to herpes and the other part is I keep testing negative. I also get twiching especially while I am sleeping which actually wakes me up. This has been going on with me for three months and it is absolutely debilitating. I also get abdominal cramping along with the tingling in my face. I believe I have HSV 1 both orally and genitally.  I plan on seeing a nuerologist.

[Terri Warren, RN, Adult Nurse Practitioner]

I think this reference would be a good one for your doctors.  This issue of neuralgia is discussed briefly in the section about recurrent herpes.  I hope Lancet is a good enough reference for them, doesn't get much better!

Lancet. 2007 Dec 22;370(9605):2127-37.
Genital herpes.
Gupta R, Warren T, Wald A.

Terri

[NervousMonkey]

Terri,

Thanks again for your help. My girlfriend is getting tested today. Can you point me at research/scholarly sources re the neuralagia? I'm desperate, but whenever I have brought up that this could be a symptoms of herpes my doctors are telling me no. I assumed that planned parenthood would be knowledgeable about this, but the doctor their stated that herpes can't cause neuralagia.

I did see an eye specialist, but my eye swelling had gone down while on antivirals and he saw no clear sign of hsv1.

[Terri Warren, RN, Adult Nurse Practitioner]

I"m sorry, but I honestly don't know what could be going on with the nerve sensations.  If your eye continues to bother you, I would recommend seeing an MD who specializes in eyes to make certain the HSV 1 that causes your cold sores has not traveled on that upper branch of the nerve group to the eye.  An eye specialist could help you sort this out right away.  

Herpes can cause neuralgia.

Did you double check with your partner to see if she was actually tested for HSV?  I think it is important to rule out HSV 2 from her.

Terri

[NervousMonkey]

Oh, and I guess I would add...I'm not expecting a miracle, but any help would be appreciated. I'm feeling pretty desperate, distracted, and this is affecting my performance at work and my relationship with my girlfriend- so any help at all would be great.

[NervousMonkey]

Terri, I can post a new question if I should, but I have a frustrating update. So, after we last talked (within a day or two), another rash started on the head of my penis (bit away from where the last one was.) No lesions appeared, though the skin in that area did "bubble Up" and eventually peal. It was very painful (it felt as though my penis had been very badly burned/scalded). Dermatologist assumes it is extreme inflamation of some kind, though said she couldn't entirely rule out herpes. Suggested a steroid creme which did seem to reduce redness somewhat but pain seemed to increase (and since I know steroids + infection are a no no, I stopped using it.) About 5 days later as the rash was healing up, I began getting nerve tinging/nubness in the hips and legs (especially where I had previously had shingles), and my eye swelled up again. Doc put me on valtrex at a shingles dose for a week, but nerve symptoms seemed to get worse during this time, radiating out from the eye on my face, and generally affecting my hands/legs/genitals/hips. I also had some suspcious pimples at different places on my hips, but was unable to get them cultured. (Derm said they looked like pimples...which they did, but as they were on "numb" spots I was suspcious.) Dermatologist and GP are at a loss, but are not recommending antivirals at this point as they question their helpfulness. The tingling comes and goes, but seems to be getting worse are are now actively painful, with an added sensation of heat. Mostly below the belt line (and my penis almost always hurts now.) I know this is incredibly complex, but I was wondering if you have any ideas for follow up (Besides a neurologist, I have appointments set up.) I tried planned parenthood, and was told that "herpes doesn't cause Neuralagia", which I don't think is true based on what I could find on the forums, but who knows...

[Terri Warren, RN, Adult Nurse Practitioner]

You're most welcome.

Terri

[NervousMonkey]

Ok, thanks a lot Terri. I've been very worried by all of this, and your response does help me worry a bit less. My Dr has recommended I see a dermatologist if I'm worried about it (seeing one on Tuesday), but seems to think it's likely just a rash/irritation and that as long as it seems to be clearing up (which it is) then we should just assume it's ok unless there's more problems in the future. My Dr has always been very good, but I wanted to confirm that with an expert. I'll ask for the swab kit as you recommend and will talk to the girl. Thanks again for your time.

[Terri Warren, RN, Adult Nurse Practitioner]

I would clarify with her about the herpes test.  Most STD screens do not include herpes, so it might be a good idea for her to get a copy of her actual test results to see what was done.  If she is indeed negative for HSV 1, then she is susceptible to your HSV 1 infection, and you both need to know that and think about what to do about it.  

I suppose it is possible that you acquired HSV 1 orally and genitally at the same time (someone kissed you and gave you oral sex), but I"m assuming that would be the woman before this girlfriend?  And you say you think she also tested negative for both types of HSV ?  Though this seems a little unclear to me from your description.  

Its also possible, and probably more likely, that this isn't herpes at all.  Since we are talking on the internet, its is all speculation.

I would be a good idea to obtain a swab test kit from your doctor, and if you get another of these symptoms in the genital area, you should swab it right away and bring the completed swab kit back to your doctor to send to the lab.  If you get another negative swab test (and I would ask your doctor to request an HSV PCR rather than a culture - its much more sensitive), I would feel pretty reassured that its not herpes.

Terri

[NervousMonkey]

OH, and I'm sorry, I am circumcised. When I say foreskin, I mean what little I have post circumcision.

[NervousMonkey]

I had my first ever cold sore fall of this year (maybe september?). Classic symptoms...prodomal numbness and tingling, swelling, lesion, and then crusted over. Only one lesion. Starting in December i got my second cold sore, same place. I didn't go to Dr after the first one, saw for second, verdict was it was probably a cold sore, looked small, nothing to worry about. I refrained from kissing my girlfriend and oral sex, figured all was clear. My second cold sore had just fully healed when I noticed the rash.

I also had Shingles in june of this year.  Small outbreak on my left leg.

One of the reasons why I question if this rash is herpes is because there's none of the prodomal symptoms, no tingling, no pain like i had with with both the cold sore and the shingles, but since I guessed the genital version could look differently I know I can't say that for sure.

Also, I'm not sure if it matters, but I religiously use condoms for everything but oral sex (in three years haven't once not done so.)  

And yes I believe negative for hsv1 and hsv2 though I could ask for sure. (She said test came back clear for everything and I'd specifically mentioned the herpes scare to her, I guess I just assumed it was both).

[NervousMonkey]

Oh, and I should add: girlfriend has been tested, came back negative. Only other girl within 3 months also says she has a recent negative herpes blood test. Not sure if it's important, but I didn't have flu symptoms or swollen lymph nodes intially, but over last day or two I have had (along with some fatigue).  This would be 3 weeks from initial infection, and I thought you were supposed to get flu symptoms before -so I don't know. Any help will be greatly appreciated.

[Terri Warren, RN, Adult Nurse Practitioner]

You mention that this is your second cold sore ever.  When was the first?  Recently?  
If your are not circumcised, and the main symptom is itching, you could have a fungal infection.  Especially since you noticed symptoms pretty soon after having sex.  Your girlfriend could have low levels of yeast in her vagina, enough to get you itching but not enough to cause problems for her.  That is a total guess.

When you say your girlfriend's test came out negative, was that negative for HSV 1 AND HSV 2, or just HSV 2?

Terri