Herpes & BFS

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Herpes & BFS

Postby JimK on September 26th, 2002, 1:57 pm

Someone mentioned in another thread that some Doctors see a possible connection between Herpes & BFS.

Does anyone else besides me have herpes? Cold sores are herpes too.

Just researching all possibilities.

Thanks.
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Postby Paranoid on September 26th, 2002, 3:03 pm

Herpes zoster or varicella zoster is the virus that causes chicken pox and also shingles. I had shingles, thus a herpes outbreak about 5 yrs ago (not pleasant) As you all know, this virus is with you for the rest of your life and I have had many " neuralgia" like symptoms since the outbreak. Its funny that you posted this as I have been recently wondering if this dormant virus could be responsible for my twitches etc. I will be sure to discuss it with my neurologist. Could you all let me know if they have had shingles and if they think there is a connection.
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Postby Jake_the_twitch on September 26th, 2002, 5:21 pm

Nope.
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Postby Tom Thornley on September 26th, 2002, 6:28 pm

I found the following quote on the harvard.edu website regarding BFS, "The cause of these symptomatic fasciculations are unclear. In many cases patients report having a viral illness such as the flu, a stomach virus or a herpes infection preceding the syndrome".
I have had herpes for twenty years with outbreaks at the base of my spine about every three to four months. Last September I developed a stinging pain in my lower back but no visible evidence of herpes and after extensive testing, MRI, CAT scan and twenty eight days of total pain, that gradually migrated to the front of my stomach, I was diagnosed with Post Herpetic Neauralgia, a viral infection of the nerves brought on by herpes. The neurologist prescibed Neurontin, which almost immediately mitigated the pain. Then, last April I started getting very persistant fascicualtions in my knee and elbow that went on for six weeks. Then, on Memorial Day I woke up with herpes at the base of my spine and was riddled with fasciculations all over my body but primarily in my lower body. I was given a very thorough two hour exam by my neurologist and an EMG. He said it was possible that either I had the early stages of ALS or more likely BFS brought on by the PHN or herpes. So for two terrible months I lived in fear of dying of ALS. I finally saw Dr. Robert Miller, the leading ALS expert in the Western United States and he confirmed that I have BFS brought on by herpes or/and PHN. However, I have done extensive research on-line and found very little information connecting herpes and/or PHN with BFS. I still have constant fasciculations in my feet and legs. At least I am not dying of ALS but the fasciculations are maddening. It is vertially impossible to sleep without sleep medication. If any body has any additional information regarding this connection, how to deal with the symptoms or any advice, I would really appreciate it. Hopefully, what I have experienced and found out will help others.
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Postby Jen on September 26th, 2002, 6:50 pm

Just cold sores. My neuro told me that 30% of BFS cases can be traced to a viral infection, but he did not know about any cause, other then stress, for the remaining 70%.
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Postby Arron on September 26th, 2002, 8:38 pm

I was the one that posted about a study I saw showing that there was be a connection between Herpes and BFS. That was one study though and it was performed in another country, so who knows so far? Keep in mind, Herpes can lay dormant for a LONG time before showing signs or symptoms, so before anyone jumps the gun and says they don't have it, consider that women rarely show any symptoms of genital herpes, hence why guy's so often get it from women, and if you have had ANY cold sores or Chicken Pox, YOU my frined.. HAVE one or more forms of Herpes in your body. Ther are several types of herpes viruses and lots of ways to transmit if from person to person and like I said, it might not ever show itself in some people and in other's, it can be a living nightmare!
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Postby Tom Thornley on September 27th, 2002, 11:27 am

This seems like pretty BIG NEWS, if correct, that 30%of BFS cases can be attributed to herpes, chicken pox and/or shingles. I am convinced, as are both of my neurologists, that my BFS is definitley a "side effect" of having herpes and/or Post Herpetic Neuralgia. I wonder how many people visiting this website, wondering if they are dying from ALS or simply mistified by there persistant BFS, have had chicken pox, herpes or shingles?
As I said before, it is very difficult to find any mention of this connection between BFS and herpes in any of the research I have done on-line, other than the harvard website. Herpes is a permanent infection living in the central nervous system and it seems that BFS is a pretty permanent affliction also affecting the nervous system.
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Postby Arron on September 28th, 2002, 12:03 pm

Slow down there on the instant miracle diagnosis on Herpes and BFS. You have to consider that about 1 in 4 have herpes in general and more than that have other forms of it since childhood. I mean, do you know anybody that didn't have Chicken Pox when they were a kid? The symptoms vary so muct that sometimes it is unknown whether a child has been exposed or not. Not all kids break-out real bad with it. My own child had it and had maybe 3 or 4 pimple like red dots on her back for about 4 days... it was indeed Chicken Pox. How many go un noticed? That is unknown as of yet. Chicken Pox is a form of Herpes and just about everyone has had it at one time or another and it is pretty common for older people to get Shingles (another form of Chicken Pox). Cold sores can be Simplex 1 OR 2. Simplex 1 is a bit more agressive than 2 but you can have either one in ANY place of your body, as well as BOTH strains in different places!

Jumping to the instant conclusion that Herpes is the underlying culprit would be like saying that the the Measles or the Mumps or a certain strain of the Flu are the cause as well. With so many people being exposed to these viruses, you can't jump to any conclusions yet until a complete medical study has been performed and even then... it may be wishy washy just as many of the studies are... Sacchrin causes cancer, no wait, it doesn't. Beer is bad for you.. no wait, now it's good for you and can prevent cancer. Coffee is bad on your stomach and the caffeine makes your heart have troubles, no wait, now coffee is a great thing for you and caffeine has nothing to do with the heart at all, wine is good for the heart and blood, no wait, it does nothing at all for either one of them. These are all real studies that go back and forth on a continual basis. So far, one study pointed at Herpes being the culprit, but Cold Fusion was going to rid the world of nuclear waste and pollution but it has never been duplicated again since the original study. Just more wish / wash. You can't jump to instant conclusions because all of the sudden you notice one common factor amongst several people. I mean, BFS always shows itself the calf area, but myself and many other's NEVER get twitches in our calves, so that kind of throws that theory out, right? With 1 in 4 having Herpes of some sort, it's no wonder there's a common thread there, maybe only people with 5 fingers and 5 toes on each hand / foot get BFS too?? That seems to be a pretty common factor here, right? There is MUCH more to it than one simple common factor. So a neuro or two say it is tied-in with Herpes.. so what? well how many neuro's also don't believe in BFS or haven't even heard of it yet? So does that mean BFS doesn't exist, because so many people in the medical field don't recognize it yet? No way... it is just misinformation and right now, with so little being studied about BFS and such, no one can say anythig one way or the other about what is or isn't the cause.. yet.
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Postby Dr. Jon on September 29th, 2002, 1:54 am

Tom, arron is right. There are probably dozens of theories on the cause of bfs. Im currently content with my own. I believe that what ever the underlying cause ie. stress,mental or physical, real health problem, or precieved health problem etc. that your brain chemistry changes, causing even more and more fear, puting your head space further out of reality which in turn worsens the brain chemistry that leads to inappropriate synapes at the neuromuscular junction. This happens most likely at the terminal branches where the neurotransmitter acytiyocoline is either over produced or its uptake is blocked which in turn causes excessive stimulation/sensitivity hence fasiculations. Again just another theory, but one that seems to fit most if not all of us. main thing is that it is benign and will lead to nothing. And the less you worry about it the less your symtoms will be even if they dont completely stop! (yes i still the twitches I just dont let them bother me anymore.)
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Postby Arron on September 29th, 2002, 9:20 pm

one more thing to consider about Herpes causing BFS; Herpes is an inflamitory virus that attacks or "irritates" the nerve endings. It is almost always painful, hence itchy, painful Chicken Pox, painful Herpes Zoster aka "shingles" (which is usually very painful), cold sores and outbreaks well, you know... down there, :oops: very painful, hot and itchy. If Herpes was the culprit to BFS and it was irritating the nerve endings in our muscles, enough to make them twitch, jolt and jerk... don't you think there would be pain along with it? I know there is some pain and cramping that is common with BFS and the like, but I am talking about Herpes kind of pain, where your nerve endings feel like they are on fire under your skin. No one ever describes this kind of pain and that pretty much makes me think it isn't any kind of Herpes invasion of the muscles and/or nerves.
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Postby Tom Thornley on September 30th, 2002, 10:34 am

OK, I have two neurologist making the herpes/bfs connection. One, an honors graduate from Georgetown University. The other one, Dr. Robert Miller, one of the most respected neurologist in the Western United States. The harvard.edu website, making the herpes/bfs connection. Jen, has her neurologist making the "30%" connection. Then, we have two responses dismissing the connection, one filled with redundant sarcasm and not from a doctor.
Discussing this possibility seems helpful and worthy of some on-going consideration. Dismissing it in a cavalier and sarcastic manner seems irresponsible and counter productive.
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Postby Arron on September 30th, 2002, 10:56 am

Tom Thornley, OK.. two neuro's you know of have made some sort of connection between Herpes and BFS... there are thousands of neuro's out there (and good one's too) that haven't even heard of BFS at all. There are other's that relate tongue twitching with "nothing good" , as one person's neuro told them on one of these forums until his EMG showed him otherwise. The doctor was stumped and had never seen that before. Not all doctors know everything and BFS seems to have many faces and many overlapping symptoms, uincluding some neuro's that claim BFS is indeed the same thing as Fibromyalgia, or at least a cross-over of one another. No one was sarcastic or redundant about anything in any posts. They were opinions pointing out different sides and showing that not all tests are conclusive, even after one or two showd positive results. How many cancer treatments wete tested and then later found to be not effective? So two claims by YOUR doctors make it so? Hardly! What I was trying to point out in one of my posts, (if you would go back and read what people actually post before shooting off your mouth) is that most likely everyone has some type of Herpes virus and may not even know it, which MAKES a connection between BFS and Herpes. My other posts were just a flip side showing that as of yet, no one REALLY knows one way or the other, just like diets, like cold fusion, wine, beer, coffee, sacchrin, cancer treatments and about every other study out there that has been done and has been "recalled" after substantial evidence was found otherwise.. much like Estrogen and breast cancer. Show me ONE difinitife test one way or the other... you can't and even the medical world is fighting back and forth about that one... so what I was pointing out is don't jump to any early conclusions yet. Right now it is wishy washy. There is still too much to factor in on the subject and almost everybody claims their doctor is the best in the US... how can so many be the top in their field? Please don't make this web site turn into one like the BrainTalk.org web site with *beep* and bickering going back and forth. If you would have read all of the posts, you probably would have understood what was being said better. I was pointing out both sides of the issue, and just because two doctors say it is, doesn't make it so until it is in JAMA or accepted throughout the medical community as fact. And again, much like any of the examples I gave, still may not be difinitive.
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Postby Tom Thornley on September 30th, 2002, 12:22 pm

Calm down, keep an open mind. your not a doctor. Call me crazy, but for some reason, I value the opinion of my neurologist more than yours.
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Postby Arron on September 30th, 2002, 1:11 pm

never said I was a doctor and never claimed to be one either, as a matter of fact, in many of my posts, I say that I am not a doctor and to take my opinion for what it's worth. Just because YOUR doctors say it is connected to Herpes, doesn't make it so, just remember that most neuro's dismiss BFS as a stress related or anxiety related disorder and nothing more... so because so many neuro's say that's what it is, it makes it right? We know those theories are wrong, and just so you know.. everything doctor's know is what they are taught and what they have read or been told. When one person reads more on a subject than their doctor's and has more experience with it, that doesn't mean their doctors still know more about it. There are many people who post on here and other boards that say their doctor knew nothing and had heard nothing about BFS or benign twitching at all. That's why so many people get scared when their doctor says "could be ALS"... how untrue and misinformed, so because they are a "doctor", what they say is always right and they always know more than people that aren't doctors? Hardly. I'm not disputing what your doctors said, I am simply pointing out that even conclusive tests aren't always conclusive down the road as more technology is available. It would seem funny that if something like Acyclovir, Valcyclovir, K-dur, Kenalog and many other Herpes fighters do nothing for BFS, that might indicate that it is of another nature. THE top Herpes guru and Dermatologist in the WORLD is Dr. Carl Beutner (THE inventor of Acyclovir and one of the founders of the famed Valtrex to name a few and a good friend of mine) doesn't think anything about Herpes and twitching or being related to BFS at all. I'm not saying to not believe your doctors and to believe Carl. What I'm saying is that just because 2 or 3 doctors say it might have a connection, doesn't make it so throghout the rest of the medical community, with other top dog doctors of the world, including Carl Beutner. I think it's just too early in the game to say one way or the other, that's all... no need to come across bashing someone's opinion and saying that their opinions are "redundant sarcasm", or that they aren't doctors when nothing was said like that at all...
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Postby JimK on September 30th, 2002, 2:45 pm

We need to research ALL possibilities. Aron, you seem way too sure of yourself of what the causes aren't. I've seen in your past posts that you knelps.. They too can even help. All information how it's not stress, you know it's not herpes, etc. You don't know S#@t and all your doing is discouraging research. We need to find a common connections & one way of doing that is to ask every question possible. There are no stupid questions or inquires. We don't know it's herpes, stress, desease either, but are looking for common denominators. It's narrow minded peolple like yourself that HURT the process of discovery.

Keep asking questions everyone. EXPLORE every possibility. Take posts from "know it alls" for what they are worth
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