First, sorry for the dramatic title, but it pretty much sums it up.
In order to make the best use of your time, I am going to try to bullet point this, instead of typing a book. I really hope you can help.
Diagonsis: HSV-1 Genital and Whitlow
- 1st outbreak - leg buring and tingling, pain at the base of my penis, genital itching, fever, swollen lymph nodes in groin. Was put on acyclovir
- 2nd outbreak - burning and tingling in legs, arms and hands (primary left), rash covering almost entire hands, buring and itching in groin, left side of face started twitching and had servere neck pain, fever, swollen lymph nodes in arm pits and groin
- Ongoing - Periodic rash on hands, buring in legs, buttocks, arm, hand, and numbness in hand (all of this feels live nerves). Burning in the skin folds between testiclas and legs, itching in pubic area, and periodic buring/stabbing pain inside penis.
The nerve issues seem to flare up and them subside, although never completey going away. The itching and buring in groin never goes away.
- I am on 1000 mg of Valtrex a day - Is this enough?
- Have you ever had some one with this level of nerve issues and will it resolve?
- What can I do about the nerve pain? nuerologist gave Nuerotin, but I do not want to take 9 pills a day and just mask the pain, but would like to resolve the issue.
- It has been 6 months now and things do not seem to be going away completely. What can I do? and will things get better or does this sound like permanent damage?
Treatments that I am consider and would love your thoughts:
- Olive leaf extract
Terry - Any help you can give me would be great. I can't seem to get any better and some times the nerve pain spikes to a 9 out of 10, literally dropping me to my knees. Please help I am running out of resources and the will to keep fighting this thing. Prior to this I was completely healthy and active.
First, thank you for your reply and starting at the begining. The diagnosis was a bit of a whirl wind.
Day 5 I began getting the above mentioned "1st outbreak" symptoms. I was immediatly put on acyclovir by my doctor, so no noticeable sores appeared. I came off of the anti-virals, after completing the course and about 4 days later the noted "2nd outbreak began". I did get (not mentioned above) some yellow crust on the shaft of my penis about 7 days into this 2nd bout, but when I wiped it way saw no sores, or bumps, just a bit red. I was not able to see my doctor, so I had to let it run its course. Over the next 5 months the "Ongoing symptoms" were constant. I had numerous biopsies and blood tests, which are listed below:
Hand biopsy: Spongiotic dermatitis
Pubic hair area bump: Unknown, but possible herpes. Sent to another lab who said unknown, but they were "not comfortable calling it hsv
Pubic hiar biopsy #2 area: Folliculitis
Buttocks biopsy: Folliculitis
3 days: IGG HSV-2 negative, IGM negative, IGG HSV-1 not tested
2 months: IGG HSV-2 negative, IGM negative, IGG HSV-1 positive 4.95
5 months: IGG HSV-2 negative, IGM negative, IGG HSV-1 positive # unknown
All other STDs clear
All other blood work and urine testing normal
I then, 5 1/2 moths in, got 4 itchy, but tiny (like the size if a needle tip) bumps on my knuckle and asked for a culture. It came back positive for HSV.
Upper spine Normal
I have been to one of the leading centers in the area and the ID doctor said there was no need to do anymore testing because due to all the symptoms being similar and starting at the same time, with the knuckle swap and blood tests that was enough. At the same center I saw of the nuerologists, and he is the one that prescribed the nuerotin I spoke of in the earlier post.
So, what next? Now that I have been on the Valtrex for about 3 weeks the rash on my hand(s) have stopped, but the pain in my groin, legs, hand, buttocks, and slightly in my arm are still there. I also have itching inbetween my testicals and legs, and throughout my pubic hair that does not seem to go away. The pain in my legs is now more like irritation and really sensative to any contact (clothing ect). It has dropped to this level before the Valtrex, but within a week I will get another major flare up where the pain gets unbarriable. I also still get periodic sharp stabbing pain/burning sensations inside my penis, and an ache in my pelvic area, near the base of my penis. It is a deep sharp ache. Most importantly, I need to get rid of this leg, buttocks pain, and pubic itching. Really driving me crazy at this point. I have "kind of" accepted the fact that I have HSV-1, but I do not know how to live until I can find a way to get rid of this constant reminder and pain.
Sorry for the book, but now you have the entire background.
OK, so we know that you have herpetic whitlow on your finger, and we know it is HSV 1 and that you don't have HSV 2.
There is no indication to me that you have genital infection or even oral infection.
Before universal precautions, many health care providers, for example, acquired HSV 1 on their hands, and had herpetic whitlow.
You've jumped to the conclusion, with the help of the ID doc, that all of your symptoms are related to an HSV 1 infection on your hand. I would disagree. There just isn't any evidence for that. Your hand rash stopped because you were taking antiviral therapy and you have hand infection. That all makes sense. But the rest of it really doesn't make sense to me. HSV 1 in the genital area rarely reactivates, and to have this much trouble that isn't relieved by antiviral medicine really makes no medical sense when the diagnosis is HSV 1 genitally.
Actually, your symptoms might be prostatic, have you had that evaluated?
the neurontin might help, but if you don't want to take it, you won't know.
If you were my patient, I would say that all your pain is very unlikely to be related to HSV 1 infection, and that you should give the neurontin and see how it goes.
Again there is nothing in here that says to me you have genital HSV 1 and several biopsies that says it isn't.
Finally, when you had the test 2 months after first symptoms appeared it was firmly positive. that means you could have acquired this as early as childhood, just no way to know!
I am having a lot of problems with this. Everything (hand, groin, leg, buttocks, fever, chils, yellow crust on penis), started directly following a sexual encounter. I know this all seems very unlikely (and I know most the research says that HSV-1 would not cause this many issues), but my sense would be that contracting it on my hand would be much harder then genitaly. So, If I got it on my hand during an encounter and had genital symptoms.....
I do not want to try to diagnos myself, but nothing else seems possible, as everthing else has come back good. I did go see a urologist, but I am not sure exactly what he checked. The nuerologist said that the virus can cause peripheral neuropathy. He is sure that the nuerotin will work, but I trying to get better, not just mask the pain (I know this may sound crazy). I just do not want to be on Nuerotin (9+ pills a day) with no clear end point, and never knowing if I am actually getting better.
Are you saying that genital hsv-1 can not cause this or it is just not seen very often? And based on the above I am going to ask my doctors for further investigation.
Have you ever read or treated a case where HSV-1 caused peripheral neuropathy. If so, how did it end? Any suggestions for recovery? Again, I am living extremely scared right now. Please be patient with me as this is uncharted territory for me.
One last thing: Where can I find a list of herpe specialists by location? I know there is only so much you can do over the internet.
I was just looking for a city so I might help to give you a reference for someone in your area who might help you.
I'm so sorry, but I can't tell you if the pain will go away because I don't really know what is causing it. Even though this began after a sexual encounter, we certainly don't know that this is herpes.
Sorry I can't help you more.
I don't know of a particular neurologist in the San Jose area, but I know of an excellent internist, Dr. Kuljeet Rai, he might be able to help you. You may let him know that I referred you. We used to do clinical research studies together.
Please keep us posted, I am experiencing almost identical symptoms but am at 3 months and blood tests neg for hsv. Rash on both hands, facial symptoms and shooting pain in legs, buttocks and pain b/t testes and leg. Hand biopsy due back next week. Have you tested for hiv? I've done 2, one at 14.5 wks and one at 15.5 wks., both neg. Starting to lose it. Have been to urologist, dermatologist, internist and even the emergency room. Blood drawn countless times. All started with genital pain, no diagnosis yet.
Firs let me start by saying I am not a doctor. I will tell everyone what is going on with me, but it is important to realize that just because I am in the crazy situation does not speak to your condition. I will let everyone know things I am doing to try to combat this thing and what doctors are telling me. However, experts on this forum (like Terri) know a lot more about this stuff then I do. So, take what I write as my situation and my situation alone. I will not comment on whether you have hsv or not. I would just say make sure they are testing for type1 and type2. Because the first time they test me they did not test for type1. Caution: A lot of people of hsv1 positive, so this alone should not be used as evidence, but it may at least help.
So here is the quick update: Yes, I have hsv1 gentially and Yes, I have hsv1 on my hands. There is no absolute, definitve way for the nuerologists, ID doctor, or any other doctor to absolutley say that all my nuerological issues are connected to the hsv1. However, it all started at the same time, so a good guess is that it is. The doctors have told me that there is nothing they can do for the nueropathy, so I am starting to research everything I can (Reading medical journals, internet research, subscribing to up-to-date medical books, ect.). I spend most of my waking day now either working or reading medical crap.
I will let you guys know if I figure anything out that works. If I am silent it is because no luck, and I may have put a shotgun in my mouth.
Will do, had another blood test done last week and still negative for HSV1, HSV2, and HIV. I'm no doctor either, just a guy trying to sort through all the stuff on the internet and not go broke at the doctors office trying to find out what's wrong with me. Your 2 month HSV1 coming in at 4 something, from what I've read might indicate previous infection. Have you had it orally before? I'm still showing negative at 4 months and don't know what's going on. I've had fatigue and muscle weakness/soreness for over 3 months straight now. The rash on the backs of my hands looks like the skin is a bit scaly and palms get red and mottled. This is what sent me on the HIV search but with negative tests at 4 months I've crossed that off the list. I can't decide if I have something or if my anxiety is sending me over the cliff.
Yeah that is what I have heard/read as well (4+ is really high for that soon). I used it get sores on my nose (like around the nostrils), but never had them tested. The mid blowing thing for me is that the Valtrex does not seem to be doing much of anything. I have been tested for HIV as well (multiple times) and I am good. What else are you experiencing? Anything in the groin or legs? I am pretty much losing my mind at this point. I am going on 6.5 months with no end in sight. I have this wide spread itch/uritation in my pubic hair and my legs constantly feel uncomfortable (pain when my clothes brush them, weird tingling sensation, ect...) Did you read my biopsys from earlier. So, now I am wondering did I have this HSV for a long time on my hand, and due to what is goin on it came out...I feakin dont know.
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