IMPORTANT: IVE FOUND THE CAUSE OF MY BFS

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IMPORTANT: IVE FOUND THE CAUSE OF MY BFS

Postby unlucky_guy on November 2nd, 2004, 3:20 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 Barb916 on November 2nd, 2004, 1:23 pm

Is it only HSV-2 that you think can cause it ? The reason I'm asking is I've been faithfully married for 11 years so there is not chance of me having HSV-2 (that is unless my husband has not been faithful - which I have no doubt he IS faithful.) However, since my muscle twitching started, back in April, I have had 4 cold sores! I used to rarely get them. Maybe once every 1 or 2 years. Now I've had 4 in the past 7 months. I have to admit the thought did cross my mind...could that virus have anything to do with the twitching. I actually did have a cold sore at the time my twitching first started.

What do you think? Could the HSV-1 Virus be a culprit also??? Or am I reaching.

Any thoughts anyone?

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Postby unlucky_guy on November 2nd, 2004, 1:29 pm

Barb916 wrote:Is it only HSV-2 that you think can cause it ? The reason I'm asking is I've been faithfully married for 11 years so there is not chance of me having HSV-2 (that is unless my husband has not been faithful - which I have no doubt he IS faithful.) However, since my muscle twitching started, back in April, I have had 4 cold sores! I used to rarely get them. Maybe once every 1 or 2 years. Now I've had 4 in the past 7 months. I have to admit the thought did cross my mind...could that virus have anything to do with the twitching. I actually did have a cold sore at the time my twitching first started.

What do you think? Could the HSV-1 Virus be a culprit also??? Or am I reaching.

Any thoughts anyone?
Barb


HSV-1 and HSV-2 are pretty much the same thing. So to answer your question, yes, your HSV-1 virus could very well be causing your twitching as well just like HSV-2 has done for me.
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Postby Barb916 on November 2nd, 2004, 2:55 pm

Just to clarify, HSV-1 causes cold sores, and HSV-2 causes genital herpes. They are not the same thing.

I have gotten cold sores off and on my whole life. I think many people get them. Is it really possible that all of a sudden, this virus is now causing BFS? Did you doctor tell you this?

I'm not discrediting what you said. I'm just looking for answers to BFS like many of us here. I didn't think that a cold sore was a "systemic" type thing. I thougt it was just a localized issue.

Thanks,
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Postby unlucky_guy on November 2nd, 2004, 6:49 pm

Barb916 wrote:Just to clarify, HSV-1 causes cold sores, and HSV-2 causes genital herpes. They are not the same thing.

I have gotten cold sores off and on my whole life. I think many people get them. Is it really possible that all of a sudden, this virus is now causing BFS? Did you doctor tell you this?

I'm not discrediting what you said. I'm just looking for answers to BFS like many of us here. I didn't think that a cold sore was a "systemic" type thing. I thougt it was just a localized issue.

Thanks,
Barb


They are the same virus. In fact, HSV-1 can infect the genital region just like HSV-2 can infect the oral region. Oral herpes are "cold sores" on the mouth, genital herpes are "cold sores" on the genitals...either type can be found at either location, though usually HSV-1 prefers the oral and HSV-2 prefers the genital region.

Well, for starters, my BFS didn't begin until I was infected by HSV-2 last year. Secondly, I've seen other herpes sufferers on a board I frequent complain about muscle twitches (though its not all that common). And lastly, my neurologist found it reasonable to believe once she ruled out any other disorders.

Its not that the virus is systemic, but for some reason, it causes something to go "out of whack" in the rest of the body...most likely the immune system. I have a hunch the muscle twitches, at least in my case, are the result of my immune system attacking my "nerves" by mistake...and this was somehow triggered by the herpes virus which "hides" in the nerves until it activates every so often. Thats the theory anyway...
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Postby LeeNC on November 2nd, 2004, 7:17 pm

Hey, I just wanted to weigh in here that I agree HSV (herpes simplex virus) is a likely trigger, whether or not it's the only one. See "Has Anyone Tried Anti-virals?" under Symptom Management, Oct 2004. For that matter, search on herpes on this whole site and you'll find several connections.

Still, I'm not sure HSV is THE trigger. To my thinking, BFS is a body's over-reaction to any number of insults, viral included.

And nobody should start wondering about fidelity at this twitchin time in their lives! HSV can sit around in your body for years without causing symptoms, and maybe emotional stress brings it out of dormancy. I mean, we could have gotten it in elementary school. The nasty Shingles is a related virus, and it has a documented connection to stress.

Having something both benign and complex means we ought to just make the best of it. Compared to those horrid first days of twitching, when I feared I wouldn't see my kids grow up, I am feeling just great. I hope you all can get there too. Still shaking and twitching, though.

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Postby marieclare on November 2nd, 2004, 11:11 pm

So....can you take any medication to alleviate the symptoms of HSV-1--I have gotten cold sores all my life--but not in the 7 years I have had BFS---I am willing to try a medication to see if it helps--I may ask my neuro...
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Postby amy_twitch on November 3rd, 2004, 4:23 pm

I'm not very well-read on this subjet, but I have to ask this question:

Isn't chicken pox a member of the herpes family? I'd surmise that most everyone on this board had chicken pox at some point in our lives. I do know that chicken pox lingers in the nervous system and can be reactivated later in life as shingles.

Along these lines, I'd assume that all of us have some form of herpes virus lingering in our systems, be it from HSV 1, 2 or chicken pox or other type (I think there are many types of viruses in the herpes family).

Maybe any virus in the herpes family can cause BFS symptoms. It seems plausible that whatever form of the virus we might have lays dormant in our nervous systems until one day we get too physically or emotionally stressed. Then, the virus then kicks off the BFS chain of events.

It would be interesting if everyone on this board were able to get a blood test to show whether or not we have antibodies to ANY type of herpes-related virus floating around in our systems. I wonder if our antibodies would be in higher concentrations than in people who don't suffer from BFS. ????

I'm not scientific enough to know if this all makes good sense--but this conversation brings up a good theory--especially in light of the fact that some neurologists do believe that there's a viral cause behing BFS. My neuro doesn't subscribe to this belief--but I tend to think there's a connection, and that stress certainly does play a part in kicking the whole thing off.

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Postby Ava on November 3rd, 2004, 9:40 pm

Amy,

I don't even think we need to take blood tests because almost everybody in the general population has had chicken pox or herpes simplex 1 or 2 except for kids 10 and under who have been immunized against chicken pox. It could be that the virus hybernates and at one point or another creates some condition that causes the twitching.

In my case, I think it could be a contributing factor along with many others like mineral deficiency and strenuous exercise - it may all combine to set off the BFS.

The important thing for all of us to remember is that it is benign and we can live healthy lives with our BFS :) .


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Postby unlucky_guy on November 4th, 2004, 1:12 am

Chicken pox occurs once pretty much, and thats it (unless you happen to one of the few unlucky people to get shingles). The herpes viruses are recurring throughout the lifetimes, and thats why they are more likely to trigger an abnormal reaction in the body.

I know what you're saying in that a lot of people has one of the 3 types...but i never had any form of herpes (except chicken pox as a kid)...and as soon as i get infected by one, WHAM...i suddenly get BFS. Its important to know the cause of the BFS so that we can find a way to cure it or at least lessen it.

If Herpes is the cause behind BFS, then possibly, taking anti-virals like Valtrex long-term may help the body return to normal by preventing anymore outbreaks. And allowing the body to "heal".

If Herpes somehow triggers an abnormal auto-immune response where the immune system attacks the nerves (thinking they are the virus)...then its possible that an immune suppressant might help alleviate symptoms, or heal us altogether.

Don't just give up and just accept the fact that you have BFS for life. We should work to find a way to fix it...
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Postby amy_twitch on November 4th, 2004, 12:39 pm

I don't know about BFS for life. Mine seems to be almost 100% gone after one year of suffering from twitches/buzzing etc...

I wouldn't be surprised if I had a 'relapse' of sorts at some point in the future....however, right now, I'm on my third month of being practically twitch free. So I'm thinking there's hope that this isn't for life. Plus, the neuros I've seen have all said that it can disappear as quickly as it started. Seems to be what happened to me.

I still have fun coming to this board to see all the discussions--everything is so interesting since this is such a bizarre 'syndrome'. Thankfully it is benign. And even more thankfully, it's no longer affecting me. I'm happy to see that so many people on this board have made a turn-around and truly accept that it's a benign condition--rather than fearing something worse (which is just simply unfounded).
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Postby LeeNC on November 4th, 2004, 7:40 pm

Hi, UL Guy:

To help with my BFS symptoms, a friend just suggested that I try taking an oral supplement called L-lysine. I just read a bit about it. It's an essential amino acid that doesn't appear to be harmful, as it's in lots of foods anyway.

The body uses it along with methionine to make carnitine, which is incidentally something that seems to help people with Chronic Fatigue Syndrome.

Thought you might want to look into lysine supplements, since lysine is widely believed to help prevent and/or lessen herpes outbreaks and shingles. Apparently these herpes viruses - herpes zoster (shingles, chicken pox) and herpes simplex (cold sores, genital herpes) - are closely enough related that lysine is believed to help in both viruses.

If anyone has any experience with lysine or carnitine, I'd like to hear about it.

--LeeNC
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Postby John_JR on November 6th, 2004, 4:07 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 Ava on November 6th, 2004, 7:41 pm

So, as I understand it, you suffered from BFS and gave it to your wife. Can you elaborate on this please? Did she "catch" it from you shortly after you got it or shortly after you met her (assuming you had it then?)? I am reallly interested in this because it would mean our families could be infected at some point.

Interestingly, one neuro I saw for an emg who heads up the UCSF ALS center said she has BFS and her parents have it too. I always sort of assumed this meant it may run in her family - not that it was passed on by infection. She also said that BFS is pretty common and not as rare as we all may think.

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