Herpes that won't go away ??

[herpescared69]

About 96 Days ago I had unprotected oral and vaginal intercourse with a woman I did not know. She had what looked like several infected cysts/boils on her lower back but i was too drunk to realize this was not a positive sign. I started to get small whitish gray raised bumps on my inner thighs within a couple weeks that increased in number and have never gone away. The dermatologist diagnosed these as folliculitis and definitely not warts.

42 days after the encounter I experienced prodromal, flu like symptoms with pain and tingling down my left leg, buttocks, thighs and lower back. I tested positive on the first day of the prodromal symptoms for hsv1 and hsv2. I have had cold sores my whole life but no known genital lesions in the past.

3 days after the prodrome started I had a rash breakout on my back and torso that the dermatologist diagnosed as erythema multiforme.  The rash has moved to different areas of my body, including chest, elbow, penis, hands but has never completely cleared up. My lips have also had varying degrees of swelling from the erythema that has not gone away. I also had lymphadenopathy in my armpits and inner legs. my lips and penis still have small cuts that will not heal.

I have had rashes in the areas between my legs and scrotum that have come and gone since the 42nd day but have never cleared up. Also, I have had rashes in the genital and *** creases that have come and gone. The rashes look more like folliculitis bumps, although one 3x5 mm area gets especially red and mildly painful and sends pain down my leg when it flares. it has flared there three separate times. Nothing has scabbed over like typical herpes sores.

I have felt low grade flu like symptoms with mild headache and sore throat and general ill feeling since the prodrome that waxes and wanes but will not go away.

I have been on 2 grams of acyclovir per day for pretty much the whole time, switching to valtrex once, but nothing will make this completely subside. I was also put on 2 courses of doxycycline for ten days each that didn't seem to do much..

I have seen 3 primary care doctors and two dermatologists that have diagnosed me with folliculitis of the genital area and all have said the rashes did not look like herpes. Nothing has been cultured because the doctors all claim there is no way to culture the folliculitis/rash areas. General blood and urine tests have all been normal multiple times.

I have tested negative for HIV at 92 days and twice previous. Prior to this encounter the skin in my genital area was always in great condition.

Is it possible this is continuous recurrent hsv2 ? All the doctors think this is impossible since I have been on acyclovir the whole time ? If not continuous herpes then what ?

[gracefromHHP]

I can best help you if you get the results of your hsv2 igg testing to post here - e.g. hsv2 igg 8.4 or whatever it is.

have you had a lesion culture done that has come back as hsv+ at all?

herpes will clear up on its own even without treatment within a few weeks maximum with an initial ob. there will be clear periods of no symptoms.

grace

[herpescared69]

Thanks for your help Grace.

First hsv2 igg was 6.93 at 42 days post exposure and second was 7.56 at 90 days post.

I have had cold sores most of my life so I am familiar with how herpes usually acts and looks. I would usually get 2-3 outbreaks of cold sores per year that acyclovir would cut to about 5 days each.

None of my skin outbreaks have looked herpetic to me and the One time I went in to try to culture an outbreak the derm said there had to be a blister to culture and it just looked like folliculitis to her. Can't they do a skin scraping ?

I have not had a cold sore in about 5 years. My body had seemed to finally have figured out how to control the virus. Hsv1 igg came back at 4.93.

I would be able to deal with a few outbreaks of genital herpes a year, but this almost 9 weeks of continuous skin rashes, radiating pain in my lower extremities along with the continuous erythema multiforme ?? is about to destroy me.

[gracefromHHP]

  if you don't like the dermatologist you are seeing now, consult a different one.

go down to the regular suppressive therapy doses too - 400mg twice a day.

indeed they can do lesion cultures of active symptoms.  it wouldn't be unusual for whatever is going on to trigger herpes but this isn't a herpes issue going on. make sense?

[herpescared69]

I have an appt scheduled to try cultures.

Since I tested positive for hsv2 on the day of the breakout do you think that I have had this for awhile or more likely from the risky encounter 42 days prior ?

Thanks for your help and this informative site. Wish I had known about it earlier.

[herpescared69]

Grace,

I actually tried to go down to the maintenance dose for the acyclovir this weekend.  I took 800 mg on Sat and 800 mg Sunday.  

Just since I last replied to you I have started to have extreme pain in my glans penis.  It is red and splotchy.  My face has also turned bright red and I feel feverish, but my temp is 96.9.  

I have tried to go down to this maint dose before and had the same result.  

It seems I have to take 2-3 grams per day to keep this at bay.  

This just will not subside.  

[gracefromHHP]

none of the symptoms you are having since going down on the dose are herpes symptoms. be seen and get proper follow up.

[herpescared69]

Was seen today by derm. Trying some steroids.

Thanks for all your help !

[gracefromHHP]

stop back and update your post when you get better answers too :)

best of luck!!!

[herpescared69]

Ok, so looks like I get the Psoriatic Arthritis diagnosis, not confirmed, but not hard to diagnose clinically.

Breakouts on elbows and knees and swollen joints and back.

Maybe secondary to Herpes 2 infection  ? Not sure but it is getting worse.

Hope the steroids help while I wait to get into rheumatologist.

Thanks.

[Marcus80]

I was reading your post and it sounds almost identical to what I'm going through right now. Had hsv2 for 5 years or so with occasional ob's but for the past 2 and half months been having unusual and constant symptoms same as you describe. I was on the maintenance dose of acyclovir prior, then eventually just stopped as I figured it wasn't helping and I even started to suspect the rash was a side effect that had developed.  Been off the acyclovir for a month now and still have this rash and what seems like single spot ob's every few days.  

Can you tell me how you got on?

[cal86]

I've also had lots of really strange spots all over my body since a risky encounter 10 weeks ago, along with pain and tingling in buttocks, down leg, in lips and face, arms and feet. Also constant ill feeling with major fatigue. I've had no classic blisters but the odd pimple on my penis, stinging in my glans and red blotchiness there too. The spots on my body are like individual vesicles, spread out on my arms and legs, they arrive in frequently but stay for a couple of weeks. Also had tingling in feet and hands. Does this sound like what you have experienced from an HSV2 infection? I have tested negative igg at 8 weeks

Thanks

[herpescared69]

Marcus and Golf,

Sorry to hear you are both going through this.  I am doing much better now.  

After countless doctor visits and many tests my doctors believe I had Erythema Multiforme and a Reactive Arthritis (Reiter's Syndrome).  They are not sure what caused the reactive arthritis but one doctor thinks I may have had chlamydia, even though I never tested positive for it.  He thinks my body may have cleared it before the tests.  I believe it all could have been from the HSV2.  

My skin has pretty much cleared up now and the tingling has almost gone away and I am on no meds.  I was on High dose prednisone, acyclovir, doxycycline, fluoxetine, hydrocodone, BP meds and Lorazepam for all my mental and physical symptoms at one point.  I thought my life was over.  

The only issue I have now is some irritable bowel and mild skin irritation that comes and goes.  I think this will get better with time as my body gets used to the virus.  

This kind of reaction is rare but I think some people's immune systems are prone to have an over-reaction when a foreign substance like HSV2 enters their body.  Although a lot of the posts I read on here make me think this type of autoimmune reaction is happening to more people than are diagnosed.  

I would see a rheumatologist to consider reactive arthritis and a dermatologist to consider Erythema Multiforme.  Good luck !

[cal86]

Thanks very much for the update, I'm very glad you're improving, it gives me hope. 80 days following the exposure, every day is painful, extremely tiring, burning feelings everywhere come and go, can't sleep, very difficult. I don't know if this is typical but not sure how much more I can take

[herpescared69]

Are you having joint pain ? Are you having eye sensitivity/redness ?
Were you tested or treated for chlamydia ?

When I was at my worst, about 90 days post exposure, I was extremely fatigued also. I had major joint pain in my knees, lower back, Achilles, toes, knuckles, as well as psoriasis like lesions on my elbows and knees. I was unable to sleep as well. Working was very difficult at this time.

The Prednisone saved me. I was on 40 mg a day for a month, then tapered to nothing over the next 2 months. Being on Pred sucked, caused major anxiety, but it worked for me.

[cal86]

Hi thanks for the tip, I haven't experienced much joint pain and have been urine sampled for chlamydia four times all of which were negative so fingers crossed I'm okay there, it's more the sore muscle aches, burning in buttocks, left leg, face, mouth and even arms and hands, had quite a lot of muscle twitching in my chest and face too. Extreme fatigue is worst. Do still feel fatigue or are you back to normal?

[herpescared69]

I would say I'm 85-90 percent. I do still feel fatigued at times, especially in the morning. I used to wake at 7 like clockwork and go non-stop until 10 pm each day and now I sleep in until I absolutely have to get up for work.

I doubt I will ever be back to 100%. The buttock and leg tingling and burning is basically gone though. Joint pain is there but very mild.

Still can't believe 5 minutes of intercourse caused this.

Are you going to see a doctor ? I would be interested to know if they thought you had Erythema Multiforme or Reactive Arthritis. You haven' t tested positive for HSV 1 or 2 ?

[cal86]

Hi, I've been to see a few doctors and been tested for HSV 1 & 2 by blood sample at 4 and 8 weeks, both were negative, around  0.4 HSV1 and 0.2 for HSV2, but I took a five day course of acyclovir two days after the encounter to reduce shedding and protect my family so I think that might have had an impact on my results, basically I think I may have it but haven't built enough antibodies yet. So I'm going back for another blood test in a week. I'll ask about Erythema Multiforme.

Yes 5 mins of intercourse has been absolutely devastating

[cal86]

Out of interest did you have any other symptoms? I've had a white patchy tongue since two days after, constant thirst, dry mouth and urinating a lot, lost appetite and lots of weight. Also my scrotum is red and penis skin appears a lot wrinklier than before, kind of clammy, sticky so my scrotum. Sorry for sick detail!

[herpescared69]

Yep. I had all those symptoms exactly as you describe.

My tongue looked like I had thrush at one point, which really made me think I had HIV.

I also had swollen areas in my mouth that would move around.

All have pretty much gone away, except my penis skin is always a little more red and irritated than it ever was before.

Oh, and 19 out of 20 doctors I saw told me I was crazy. I was persistent because I knew things were not right. A great dermatologist took the time to listen to my symptoms as a whole and correctly diagnosed the EM and RA.

[cal86]

My heart sinks, I was hoping it was coincidence but sounds to me like HSV2 is the cause of all of this, although not diagnosed yet

[cal86]

I have had the white hairy tongue since literally two days after, I freaked that it was HIV too but have tested negative, I've still got it and it's very sore. I've never read this as a symptom of HSV. I wonder if my body will naturally produce antibodies to fight it and it will improve naturally or if I need pharmaceutical help. Also had tiny white spots in my lips at the corners, quite painful.

I am the same, doctors tell me it's stress because of no obvious blister, I just want a concrete diagnosis

[cal86]

I have had the white hairy tongue since literally two days after, I freaked that it was HIV too but have tested negative, I've still got it and it's very sore. I've never read this as a symptom of HSV. I wonder if my body will naturally produce antibodies to fight it and it will improve naturally or if I need pharmaceutical help. Also had tiny white spots in my lips at the corners, quite painful.

I am the same, doctors tell me it's stress because of no obvious blister, I just want a concrete diagnosis

[herpescared69]

That's interesting. I have the tiny white spots at the corner of my lips also.  left side only. No one can tell me what they are.

I wouldn't jump to conclusions. If you've been negative for HSV antibodies I wouldn't assume you have HSV. Maybe you had Chlamydia that started the reaction and your body cleared it.

Just keep seeing your doctors and keep getting tested until you come up with an answer and get better.  

Please let me know what you find out.

[cal86]

Thanks friend, I sure will, from all the posts I've read I'm sure it's HSV, I feel so sick and ill with burning everywhere, not sure anything else can do this. Anyway my MD told me the tiny white spots in my lips were fungal angular chelitis so I've been putting anti fungal cream on them. Hasn't made a difference so I don't think they are, I think they're somehow related to the HSV. Or fordyce spots which aren't supposed to be contagious but it's a bit if a coincidence they started straight after the encounter. I also got a lot more white spots up my penis like mini hair follicles, some hair has started growing out of these new follicles at the base, but some don't which makes me worried they're HPV. Also had a couple strange spots on my fingers that made me think I was developing whitlow. Skin on my hands has turned very dry and wrinkly. Might get blood test tomorrow which would be 11 weeks, does it make a difference to wait till 12 weeks?