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 ?

[herpesbaby87]

How are you feeling @herpescared69

[herpesbaby87]

Was it a one off thing, a lingering hsv?

[herpescared69]

I rarely check this email so sorry for my late reply. I have been pretty outbreak free for the last 6 years but I did have a flare-up of erythema multiforme (EM) and reactive arthritis in the last month (March 2019). It's pretty brutal again this time with joint swelling (mainly knee and shoulder) swelling of hands and feet and lymphedema. Steroids don't seem to be working this time so my rheum wants to put me on plaqenil. I did not have a hsv breakout that I know of but I'm  going to try 400 mg tid of acyclovir for a couple weeks first to see if it knocks it out. There are cases in the literature about arthritis flares secondary to EM and EM's main cause is hsv.

[auntiejessi]

I'm sorry you are having such a hard time. :(

Is there a reason you aren't on suppression already? That seems to be the treatment for HSV-related EM. It doesn't look like acyclovir will resolve the current flare, but will help prevent future ones.

https://emedicine.medscape.com/article/1122915-treatment

https://www.aafp.org/afp/2006/1201/p1883.html

I hope you start feeling better soon, and thanks for coming back to update us. :)

[herpescared69]

Any recent updates cal or marcus ?

[marshapple]

white tongue? do you think its yeast?

[cal86]

Hi another update, bloods and swab just came back negative 11 weeks after, same numbers, but still got all the symptoms, driving me crazy!

[cal86]

Big thanks for the support, I'm like most people right now, feel like killing myself, but sure hope it'll get better

[herpescared69]

Well it sucks if you end up having herpes, but it does get better mentally and physically over time.

I feel good now. Ive had no problem dating, lots of beautiful women have it.

The stigma is worse than the disease. Try to stay positive. You'll end up getting better.

[elsacapz1]

Bro, how have you been doing since you've commented on here? I'm in the same predicament that you guys were here in this post. I have yet to test positive for HSV2 but only have HSV1. You say you've had no problem dating? Where have you met these beautiful women? Online? Support groups?? Herpes has hit me hard to the point of severe depression and thinking my love life is over and I'll never be able to marry and have a family. Please let me know how you've had no problem dating and meeting these women. I don't even know how to begin that process now. Hopefully you reply. Take care.

[auntiejessi]

Listen, you know I don't think you have herpes. I'll answer this anyway.

I've had hsv2 for years - over 10. I have dated, had sex, etc. I've not married, mostly because I don't think I need to). No one has ever turned me down. NOT ONE. I've tried using it as a deterrent, like "Oh dude, you don't want me, I have herpes", when guys won't get the message, and that doesn't even work. A couple have even told me they have it, too.

I'm not anything special, nor am I overwhelmingly beautiful. I'm just a normal woman who could probably lose 20 lbs. It doesn't matter. If someone wants you, they want you.

There are dating sites for people with STDs. I'm not telling you what they are because I don't want you to go on there and say you have hsv2 when it hasn't been proven you do.

PLEASE get help for your anxiety and depression. PLEASE. That should be your #1 focus right now. Your mental health is way more important than if you have herpes or not.

[herpescared69]

I rarely check this email so sorry for my late reply. I have been pretty outbreak free for the last 6 years but I did have a flare-up of erythema multiforme (EM) and reactive arthritis in the last month (March 2019). It's pretty brutal again this time with joint swelling (mainly knee and shoulder) swelling of hands and feet and lymphedema. Steroids don't seem to be working this time so my rheum wants to put me on plaqenil. I did not have a hsv breakout that I know of but I'm  going to try 400 mg tid of acyclovir for a couple weeks first to see if it knocks it out. There are cases in the literature about arthritis flares secondary to EM and EM's main cause is hsv.

[herpescared69]

There are plenty of hsv/std dating sites you can google elsacapz1. The only thing that I have found is I had to travel to meet someone  I really liked.

[auntiejessi]

I'm sorry you are having such a hard time. :(

Is there a reason you aren't on suppression already? That seems to be the treatment for HSV-related EM. It doesn't look like acyclovir will resolve the current flare, but will help prevent future ones.

https://emedicine.medscape.com/article/1122915-treatment

https://www.aafp.org/afp/2006/1201/p1883.html

I hope you start feeling better soon, and thanks for coming back to update us. :)

[herpescared69]

Hi auntiejessie,
Thanks for your reply. I have had almost no hsv outbreaks for 6 years. I have had a few very mild, almost unnoticeable EM/RA flares in that time as well. So I didn't feel the need to be on suppressive treatment. I feel like this flare will be mostly self -limiting as well, even though it has been more intense.

My rheumatologist thinks I may actually have psoriatic arthritis. Looks like some research show PsA may actually get started from viral or bacterial infections as well. The bottom line is there is still a lot of guess work going on by even the specialty trained physicians when a lot of us would like definite answers.

Partly for fun, I am going to new dermatologist on Monday to look at my skin and I am not going to give my history right away just to see what kind of answer I get. I am just going to reveal my current symptoms and let them do a physical exam. I'll update you on that.

Overall I'm doing ok and know this soon shall pass.

[auntiejessi]

That makes sense.

Let us know how it goes on Monday. Good luck!

[cal86]

Thanks man, now getting pain in my groin and small spots on my thigh, think this is it happening

[Marcus80]

Thanks for getting back. You've been really helpful. Glad to hear you got better and are doing good.

[herpescared69]

I'm not convinced you have HSV. No antibodies and no classic hsv lesions are signs you don't.

You are having a reaction to something. Virus, bacteria, who knows. You may never get an exact answer from your doctors. I would retest at 90 days and 6 months.

It is amazing your symptoms are exactly like mine. Yes, those spots on my lips look exactly like angular Chelitis too. I also have enlarged fordyce spots on my penis. It's not HPV.

I had the exact same symptoms on my hands and thought whitlow too. They never came back.

I may have had HSV for years and not known it and this was something different. Unless we have something not described yet I would Explore the EM and RA diagnoses.

Keep me informed and tell your doctor you are not the only one with these symptoms. Maybe go to a teaching hospital ? They listen better.

[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?

[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]

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

[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

[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]

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!

[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

[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 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]

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]

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]

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]

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

[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?