Herpes & Fasciculations

Hi All

Since receiving oral sex from a girl with a healing cold sore, I have suffered quite badly with symptoms which I believe to be associated with contraction/reinfection(?) of HSV-1 to the point it has destroyed a large part of my life as I once knew it. Symptoms in chronological order are as follows:
Day 1-2: Severe itching on my hands and feet
Day 3-5: Tingling down backs of legs and anal burning at night
1 Wk - 4 Wks: Severe lower back pain, tingling, muscle aches and fatigue
1Mth - 10Mth (current): Constant muscle fasciculations (100's per day), tingling, fatigue/exhaustion, muscle pain, lower back pain (on and off).

Here's the confusing thing though...I should have immunity to HSV-1 (according to medical literature) as I've had it orally since I was young. I have tested positive to HSV-1 (pre and post) as you would expect and Neg for HSV-2. I have never had genital blisters, but have had redness at the time. I have tested negative for every other possible thing you could have wrong with you including thorough neurological exams. I don't take meds but tried 3 weeks of Valtrex which did nothing.

I guess my questions are: 1. Does/has anyone else suffered from this? 2. Is any research being done into it? (I'm frustrated with Dr's telling me its not herpes - Grrr!)  
  

[russty]

I know what you mean! I've been seeing docs for two years and they cant give me an answer either....except that of course....its not herpes? I'm no doc but I belive you may have contracted hsv2? and your body is trying to fight it? But I would not expect a doctor to have any idea what is going on? I would buy some lysine and some good vitamins?

[gracefromHHP]

odds are this isn't herpes going on at all. nothing you've mentioned sounds like herpes.

what sort of work up have you been thru so far?
grace

[jigsaw13]

Russty - I feel for you as this really sucks. Thanks for the advice but I'm an athlete or at least was before this so I know a lot about nutrition and my body and have tried all that you have mentioned and more++. Have been cleared for HSV-2 and the girl actually told me she had been getting fever blisters since she was 10 so I'm assuming HSV-1.

Grace - Your response is typical of all doctors I've consulted, not that I don't appreciate your input. Work up, where do I start!? All STD's, electrolytes, allergies, hormone levels, vitamin & minerals, motor neuron, ms etc, lumbar scans, weird tropical viruses the list goes on...

[gracefromHHP]

perhaps it's time to start  listening then if everyone is telling you that this doesn't sound at all hsv related from your receiving oral sex??   even if you hadn't had hsv1 previously to make the likelihood of you contracting hsv1 genitally later on extremely small, you still never had any symptoms typical for hsv1. So many other viruses out there and it could've been completely coincidental that this all started after you received oral sex from someone or most certainly nothing to suspect as genital herpes.  

The only thing I can suggest is that you continue following up with a neurologist regularly. herpes shouldn't even be on your list of things that are the cause of all of this.  

any follow up questions about this and its relation to herpes, should be asked on Terri Warren's board here on medhelp. She is our herpes expert and one of the top herpes researchers in the US. You have to pay to post on her board but unfortunately nothing we can really help you with with this here on this board.  

grace

[jigsaw13]

Ok Grace, thanks for your advice. I guess it's quite hard to see around it being anything else than the herpes virus as it's so coincidental. I do have symptoms that have been associated with herpes such as tingling, itchiness, redness & sacral back pain...? Although this is far from textbook HSV-1 I do believe it to be the cause. I guess it's all here say anyway until someone can  scientifically prove something but my post was really about seeing if anybody else had a similar experience rather than seeking a diagnosis. If someone out there has then it'd be good to hear from you. Thanks for your time Grace.

[gracefromHHP]

you should be following up regularly with a neurologist to try to get to the bottom of this. so many things this is more likely to be than herpes.

if you really can't let go of hsv1 as a cause, look into daily home pcr swabbing for a few months. No hsv1 detected then you know that you didn't contract hsv1 genitally. it's expensive but perhaps it's the proof you need to convince yourself.   A dermatologist can arrange this for you if you can convince them that you will pay for it.

it's very difficult when you don't have a clear cut diagnosis I know.  So many different viruses out there though and close contact in general with someone is a way to transmit them.  For instance in my own life - over 30 of us had contact with a sick patient a few years back but only 1 of us was unfortunate to contract a viral infection that resulted  in heart failure and the need for a heart transplant 4 months later.  it really is as much about bad luck as anything when you contract infections and we don't always have the testing to figure out right away what it was. months later - too late to figure out the exact cause and we just treat the symptoms. make sense?  

[jigsaw13]

Yes, difficult when no diagnosis, depressing to lose a significant part of my life and frustrating that things can still go undetected these days...but they were probably saying that 50yrs ago too. 100's of people on the benign fasciculation website suffering quite similar things to me and not many get a resolution.
I'm in Australia and never heard of a home pcr kit for herpes detection but I will look into it, thanks for that suggestion. Oh and I'm keeping in touch with my Doc every couple of mths who has already sent me to 2 neuro's, one of them with a very good rep here in Oz.
Grace everything you say makes perfect sense. I initially thought herpes when it happened, however after being told by sexual health dr that symptoms like this are very rarely seen without a really overt outbreak of blisters, I went looking for other things only to eventually come back to herpes. I guess the timing of it all lead to this but as you say it could quite rightly be another virus of some sort.
Grace, do we know if there a subtypes of the HSV-1 and 2 viruses? And do you know much about latest research into herpes - vaccines, cures etc?

[gracefromHHP]

it's easy to do home pcr swabbing. you wet a medical q tip, swab your anogenital area then put it in transport medium. You can save money by combining them all into a tube/month since you are only checking for shedding of the virus. no idea what it'll cost you over there but here it's a about $50-$100 for a tube total.  

yes there are subtypes of hsv1 and hsv2. research has shown that even in folks who have multiple different subtypes of the viruses, no difference in symptoms. Not like there's one type that is "worse" than the others or anything.

no cures in sight at all yet. we don't have cures for any viruses so that's not as bad as it sounds.

some "theracines" being tested for folks who have hsv2 to free them up from their daily pills ( they aren't looking at their effects on hsv1 at this time I don't believe ).  couple of other researchers with some hopeful results so far but money is tight all over so no idea when they'll get to the human testing stage.  

keep following up with the neurologists.  they should at least be trying medications to control your symptoms at this point even if they can't find a cause of them.  

best of luck!

[jigsaw13]

Thanks Grace, you have been very helpful and I do appreciate your time.

I don't mean to be difficult here but you only have to look at past posts such as the following to see a possible association between herpes and tingling+muscle twitching...

http://www.medhelp.org/posts/STDs/some-atypical-herpes-symptoms-but-no-sores/show/1089070
http://www.medhelp.org/posts/Herpes/what-do-i-have-/show/782250
http://www.medhelp.org/posts/Neurology/muscle-twitching-virus/show/1229037
http://www.medhelp.org/posts/STDs/Symptoms-caused-by-HSV-1--2/show/696863

There are many more cases on medhelp and other sites that I could link but I think you get the point...I just find it sooo frustrating that Dr's/Researchers can't have an open mind and look into this.

[gracefromHHP]

I've yet to have a poster who ended up having herpes be a cause of all their symptoms that they attribute to symptoms. Same goes with Terri warren, HHH and Dr Hook's experiences with patients and they've all been practicing a very long time each.  There is one small study of folks with issues post herpes infections and every single one of them had a cessation of symptoms once placed on daily suppressive therapy.   most of the posters who come here insisting herpes is the cause of their symptoms, never, ever get + test results that show that they have genital herpes even let alone that it's the cause of it all. In the past folks have found out that they have anything from hemorrhoids, hernia's, anxiety to sometimes even very serious things like M.S.  

It sounds silly to say but just remind yourself that just because it has feathers, doesn't mean it's a duck.