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Prolonged Outbreak...HELP PLEASE HELP!!
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Prolonged Outbreak...HELP PLEASE HELP!!

Hello,

I need some help.  I have recently been diagnosed with HSV-1 Whitlow and Genital.  I am having buring, pins and needles in my legs, butt, and groin.  I first outbreak was pretty bad, with nerve pain in my legs, swollen lymph nodes, flu symtpoms, but not very many sores, almost none.  I was put on acylcovir and things went away for about a week.  I came off of the medication and within 3 days everything was back, only worse.  And my hand, and arm began the same pain I had in my legs.  I broke out in a rash all over my hand, literally all over my hand.

Over the course of the last 5 1/2 months I have had constant nerve issues in my (burning, tingling, sharp pain, and sensitive to touch) legs butt, groin, arm, and hand.  The skin between my testicals and leg are constantly burning, but no sores.  I have a lot of itching and some times it feels like I am getting bit by tiny bugs up and down my legs (mostly right near the top of my knee), on my butt, and in my groin.  The herpetic rash is very small, almost none extistant.  It took the doctors up unitl 1 week ago to even find I sore to culture.  I got 4 pin (tiny) small bumps on my knuckle, and rushed to urgent care (they itched really bad).  The doctor took one look and said I do not think it is whitlow, but a gave him the story and asked that he culture...It came back postive for HSV-1.  I have had serveral blood tests, so I know I do not have HSV-2.  There is another spot on my hand that has a rash that comes (last for about 6 days) goes for a few does and then comes right back.

I have now been on valtrex 2000 mg for 6 days and am not getting much relief.  As a matter a fact 2 days after I started it things got worse (The rash on my hand that had been gone for a month came back).  Now things seem to be back to the way they were, but no better.  I started L-lysine 1000 mg yesterday for some hope.

I know after a lot of research that people will say that this can not all be related to herpes, but a swear on everything that is holy that I was 100% healthy until I contracted HSV-1 (box, worked out daily, hold a very senior position and a very good company....I am not crazy.

Any advise or thoughts please.  How long should the valtex take?  Will it help with the nerve pain?  What do I do about the constant itching?

Thanks!!
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16 Comments Post a Comment
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Avatar_m_tn
One thing to add the itching is extreme through out my pubic hair and up into my bladder area

Thanks again
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101028_tn?1419606604
odds are it's a fungal infection in the groin area at this point causing the itchiness.

I'd follow up with a dermatologist to try to get to the bottom of things.

lysine does nothing significant at all for herpes. no real reason to supplement with it.  

grace
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Avatar_m_tn
Hey Grace,

First, thanks for the input and all that you do.  I have been to the dermatologist many time.  They can not find anything.

Any idea on how to get rid of the nuerological burning?  It is like when there is any touch (inner thigh touching), close on skin, rubbing my legs, ect.  My skin hurts/burns.  When it is not buring it feels like little bites up and down my upper legs.  And yes went to a nuerologist and MRIs were normal.  

I have now been on Valtrex (2000 mg) daily and I just had another severe outbreak.  No visible sores, just anal itching, pain in my penis (not when urinating)...That was yesterday.  Today, the above mentioned buring is REALLY paid.

Any help?  Things are pretty bad.

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101028_tn?1419606604
they have to find a cause for the burning sensation before they can really treat it.  

have you tried stopping valtrex completely to see what happens? Might give you a better idea of what is really due to herpes and what isn't. Just pain and itching, isn't a severe ob by no means and odds are it's not even herpes related.  The dose you are on for valtrex isn't necessary and might even be adding to your issues so honestly I'd just stop it for a few months and be seen every time you have new symptoms.  
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Avatar_m_tn
Thanks Again Grace!

I was not taking anything for the last 5 1/2 months and the nerve pain (assuming because it stretches from my groin, buttocks, and legs (back and front) would get really bad and then seem to be subsiding, and then flare back up to an unbearable level.  It sometimes feels like a deep throbbing pain too.  I started the valtrex right after I was diagnosed with the knuckle swab.  Assuming things would get better but no luck.  

The odd thing is that I get the same sensation on my hand, arm, groin, and legs, so am assuming it is related to the HSV-1 (the doctors have not been able to find anything else) and it started at the same time.

Any ideas (just to get my started) on things that may cause anal itching, burning, and tingling sensation stretching from right behind my testical, and into my penis (inside not skin surface)?   Then the next day progress into the above mentioned leg pain, with burning (feels like it could be skin level) in the folds between my testicals and legs.  From what I can see there is only one little tiny bump, but it looks like a white head on my inner thigh.  Any ideas?

I am going back to the doctor next week, but I am in really bad pain.  The sores on my knuckles did not even hurt, but itched.  However, the pain mentioned is unbarriable.  Are they outside things that the HSV virus can cause (trigger nuerological dissorder, ect.)

In addition, what would be an appropriate level for valtrex?

I tried to keep it short, but it was hard...sorry!
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Avatar_m_tn
Sorry to post again, but I am in desperation.  My entire groin is burning and throbbing.  The pain in the legs are not as bad as the groin, but it is still there.  I am in so much pain and I do not believe my pain tolerance is low.  On a scale from 1 to 10, I am at a 9.  This is crazy....Any help Grace or anyone that knows how to get some relief.  I am so scared that this won't go away...It has never been this bad.

Grace - I am going to drop the valtex to one pill a day 1000mg (1g).

PLEASE HELP!!!!
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101028_tn?1419606604
really nothing else I can do to help you. be seen by a dermatologist or a neurologist every time you have symptoms to try to get to the bottom of things.  
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Avatar_m_tn
Hey Grace,

Hope this can help someone in the future and any words of wisdom from you would also greatly help me.  I went to one of the leading nueroscience and nuerology centers and they said that is was peripheal nueropathy caused by the HSV-1 virus.  They have given Nuerotin (spelling), but I am 32 and don't want to take 9 pills a day for the rest of my life.  They have now referred me over to ID to talk about getting the HSV-1 under control.  I am trying to figure out how to get both under control.  I also started taking an anti-fungal prescription to see if that helps with the ongoing itching.

At this point still no positive culture from the groin, only the hand, but since it all started at the same time (exact same feeling), I am fairly certain it is the same thing.

Have you had any experience with hsv-1 induced nueropathy?  Will it subside?  Any suggestions on things I can do?

The nerve pain in my groin, butt, and legs are really bad (some days better then others, but always there).

Thanks in advance and hope the info can help someone in the future because it was a long road to just get diagnosed.
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101028_tn?1419606604
I encourage you to pay to post to Terri Warren, our herpes expert here on medhelp.
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Avatar_m_tn
How do I find Terry Warren.  I am willing to pay the fee, just can't figure out how to send her a direct message.
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101028_tn?1419606604
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Avatar_f_tn
heyyy, i have similar issues.  and i found out that not only did i have the herpes, but also a vitamin b12 deficiency, that has psycho nuero side effects, i was burning, tingling, itching and once diangnosed with the b12 deficiency and started taking the otc b12 sublingual tabs (super cheap, can find them at walmart) i was fine.  I also take valtrex, i find that it does work for outbreaks, i also have all three simplex viruses and i also have occular herpes (in the eyes).  But i would ask your dr to test for a b12 deficiency, if not that test for nueropathy.  Best wishes!
Jessica
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Avatar_f_tn
Stop taking your meds. Take vitamin B-complex and cranberry for the Herpes. Also do leg and glute , just incase its not a trapped nerve or sciatica. Also try vitamin D for the pain
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Avatar_f_tn
Stop taking your meds. Take vitamin B-complex and cranberry for the Herpes. Also do leg and glute , just incase its not a trapped nerve or sciatica. Also try vitamin D for the pain
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Avatar_f_tn
Lower back pain,lower stumuch crumps,body feels hot sumtyms, ma legs fefeel weak sum tyms. Wat cn b da problem. So dat wn I get tested I cn @ list knw abit wat I myt b facing.
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Avatar_f_tn
Hey Tscare,

I am having the EXACT same probs.  Any new news or updates yet??

Thank you
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