IMPORTANT: IVE FOUND THE CAUSE OF MY BFS

Information about how to manage or reduce the severity of BFS symptoms

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IMPORTANT: IVE FOUND THE CAUSE OF MY BFS

Postby unlucky_guy on November 2nd, 2004, 3:19 am

After visiting numerous neurologists and pretty much spending days on end trying to figure out what caused my BFS...I've found that my BFS was caused by a HSV-2 (Herpes Simplex Virus) infection all along.

I apparently got infected last year, though I didn't realize it at the time...but I was experiencing "weird symptoms" (like tingling) in my legs which I brushed off. But after visiting a doctor and looking back on them, they were Genital Herpes outbreaks. And pretty much at the same exact time as I was experiencing those Herpes outbreaks...I started having muscle twitching all over my body (especially the legs).

I have finally received a confirmation of my herpes diagnosis by blood test...and I'm sure it is the culprit because after reading up on message boards for Herpes sufferers, I've found that other people have complained about full-body muscle twitches!

So...in short, I'm 100% SURE that there is a link between HERPES SIMPLEX VIRUS and BFS. It may not be the only cause behind BFS, but just in case, my advice to you guys is to go get a blood test and find out if Herpes is the cause behind yours too. If it is, maybe we can figure out a way to stop it.

Any comments?
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Postby kim on November 2nd, 2004, 8:46 am

There may be a connection for SOME of those suffering with BFS, but not all. I have read several other posts from folks with similar theories. But many others claim they don't have HSV2 (not sure if they've been tested...you can be a carrier without knowing it...)

I have had HSV2 for 15 years but the twitching only came 2-3 years ago. I don't think it was the cause for me, but it could certainly have contributed.

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Postby unlucky_guy on November 2nd, 2004, 1:34 pm

kim wrote:There may be a connection for SOME of those suffering with BFS, but not all. I have read several other posts from folks with similar theories. But many others claim they don't have HSV2 (not sure if they've been tested...you can be a carrier without knowing it...)

I have had HSV2 for 15 years but the twitching only came 2-3 years ago. I don't think it was the cause for me, but it could certainly have contributed.

Kim


HSV-1, which is more common, could also cause BFS as well. I'd be interested in hearing how many people here actually have either HSV-1 or HSV-2.

All it takes is one Herpes outbreak to throw your body out of whack...I have a hunch that in the process of fighting off a herpes infection (which hides in the NERVES), for some reason the immune system goes "hay-wire" and begins attacking nerve pathways throughout the body thinking they are the herpes virus. When the coating that surrounds the nerves (which allows electrical signals to pass through) gets weakened by these attacks...electrical signals are passing through to the nerve when they shouldn't...hence the random muscle twitches.

Thats the theory anyway...herpes somehow triggering an auto-immune disorder.
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i suspected the same

Postby FargoND on November 2nd, 2004, 3:16 pm

Yep, I've had Herpes for several years now and the mucsles twitches are new. It makes sense though. Has anyone tried to stay on Valtex to lessen the twitches..or has the damage been done?
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Postby Saundra Hearn on November 2nd, 2004, 6:58 pm

I do not have HSV2, however if HSV2 is a virus, it goes along with what my nuero told me that I probably had a virus of some sort and then it attacked my nerve endings which then affected my muscles, and I beleive I have read here of others that have had virus's before twitching.
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Postby unlucky_guy on November 2nd, 2004, 8:53 pm

Saundra Hearn wrote:I do not have HSV2, however if HSV2 is a virus, it goes along with what my nuero told me that I probably had a virus of some sort and then it attacked my nerve endings which then affected my muscles, and I beleive I have read here of others that have had virus's before twitching.


It doesn't necessarily have to be HSV-2...it could be HSV-1. A lot of people have HSV-1 or HSV-2 and just don't know it (cause they don't show any obvious symptoms). I didn't know I had HSV until I got a blood test.
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Postby Jayel on November 3rd, 2004, 3:23 pm

Wow, I find this very curious. I am married and do not have any type of outbreaks of any sort. However, I did have a cluster of terrible coldsores on my lip last year that I have never had before or since. IS this what you guys are talking about, or is it the genital type. Sorry, I am sort of ignorant on this topic.

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Postby unlucky_guy on November 3rd, 2004, 5:38 pm

Jayel wrote:Wow, I find this very curious. I am married and do not have any type of outbreaks of any sort. However, I did have a cluster of terrible coldsores on my lip last year that I have never had before or since. IS this what you guys are talking about, or is it the genital type. Sorry, I am sort of ignorant on this topic.

Jayel


Cold sores is "oral herpes"...which is usually HSV Type 1 (though occassionally they can be caused by type 2). It sounds like you have herpes...did they in any way coincide with the onset of your twitching?

I know for a fact that I never had any form of Herpes...then I was infected by my girlfriend with HSV-2 (genitally). And after my first outbreak...the twitching started up in my legs and soon spread to the rest of my body, and hasn't quit since. So theres no doubt in my mind that the Herpes virus I was infected with was the cause of my BFS.

I think we're onto something...
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Postby Jayel on November 4th, 2004, 8:52 am

I hate to say it, but I cannot remember if it was before or after the twitching began that I had the outbreak. I had several surgeries last year and am wondering if the breathing tube or hospital infected me orally. I definitely do not have the genital type.

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Postby John_JR on November 6th, 2004, 3:58 pm

Not to throw a wrench in, but I "gave" BFS to my wife years ago and I don't have any STD's, or should I say no STD's known by the medical industry. Therefore, in my case and perhaps many others here, I believe BFS to be some type of infection all on its own (yes sexually transmitable too). So what I'm really trying to say is those of you who have Herpes might have also contracted another (hidden) infection that is causing the BFS-like symptoms and not the Herpes itself. Contracting herpies means that you have been exposed to unsafe sex and therefore have been exposed to possibly other things at the same time. Some are known and some maybe unknown.
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Postby jasonh_22 on November 6th, 2004, 11:50 pm

John_JR wrote:Not to throw a wrench in, but I "gave" BFS to my wife years ago and I don't have any STD's, or should I say no STD's known by the medical industry. Therefore, in my case and perhaps many others here, I believe BFS to be some type of infection all on its own (yes sexually transmitable too). So what I'm really trying to say is those of you who have Herpes might have also contracted another (hidden) infection that is causing the BFS-like symptoms and not the Herpes itself. Contracting herpies means that you have been exposed to unsafe sex and therefore have been exposed to possibly other things at the same time. Some are known and some maybe unknown.


You think BFS is transmittable?? Thats scary...
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Postby mike3456 on November 9th, 2004, 1:52 am

Here's a very thorough discussion of HSV-1 and HSV-2.

http://www.herpes.com/hsv1-2.html

I tested negative for both about 8 years ago via blood test. Recently, about 2.5-3 months after the start of my twitching, I goy my very first cold sore on my lip. My g/f of 8 years has always gotten 2-3 cold sores per year. I also had swollen gums, and swollen lymph nodes under my chin, which leads me to believe is was a primary infection (I was infected recently). Symptoms from the initial infection tend to be a bit worse than subsequent flare-ups. This is unusual, if true, because most people are infected with HSV-1 in childhood and the virus remains dormant for some time after the primary infection. How long the virus is dormant after that depends on the person. Here' a quote from the article:

"By the time they're teenagers or young adults, about 50% of Americans have HSV-1 antibodies in their blood. By the time they are over age 50, some 80-90% of Americans have HSV-1 antibodies."

The possible link to twitching is interesting, especially because the virus resides in nerve cells, but HSV-1 is so common I think it's hard to draw any conclusions.
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