Past 6 Months With BFS

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BramTyBram

Active member
Good news, i am now past the dreaded 6month mark and realize i have BFS. i know it shouldn't have taken all that time with all the Doctors and testing reassurance but all you know what i mean with time being an important element in acceptance. Hey i am curious i have read many times and even my GP once suggested that this condition could be a virus that gets in your nerves or muscles or something. Anyway, i know this is a touchy subject and people may not want to disclose but i am wondering if anyone has ever taken or heard of anyone taking a herpes medication for this twitching crap. i don't know if they test you for different herpes when they do all the initial blood work or not. Due to the subject matter i understand if people aren't wanting to post but if there are any medical reports or generalized theories i am very interested in reading. Now that i know what i have i am comfortable living with the twitching but i am also not afraid to try and fight it either. If this is a subject that has already been threaded i apologize i am lazy in searching things. And my wife has banned me from searching google, so i am limited to using the internet for what it was intended free *beep*. Just kidding. Thanks. BW
 
I have to chime in on this one. We all know that I'm a BIG believer in the Virus Theory. I havnt been able to come up with much that would support taking anti-virals to treat BFS, if it was that easy I would think alot of docs would be passing those out rather than anti-seizure meds and muscle relaxers (which I'm not a huge fan of either, but thats just me). Taking anti-virals should be done with caution because there side effects can also cause issues with the nervous system, so with that being said, I think its a bit of a gamble, but then again, trying something is better than doing nothing, so once again, a personal choice. Theres my 2 cents :D)
 
Bw2so are you saying- you have a herpes virus that is causing your nerve issues? or at least possibley it could be caused by the herpes virus? and or your are asking if anyone has tried or is on a herpes anivirus that helps with nerve issues and or muscle issues. correct? My question would be why do you think this is a possiblility is it from your doctor or your own research or? Are you suggesting that the herpes virus may be the culprit as to our symptoms? Just trying to define your observation or question.D
 
As far as i know i have never tested positive for any of the herpes virus's, that being said i don't know if i have ever been tested. I have read in some reports that a type of virus (possibly a Type of Herpes, i guess there are more than one type) could cause an auto immune response that we see with the muscle twitching and possibly the other sensory symptoms that come and go. I guess i figured someone in this forum may have been on a herpecin or something of the like and maybe it helped manage the symptoms or not. That was all i was curious about. If it was a definate yes it helped me, then the next step would be to get a test to see if that type virus was in m blood stream or not and take some action from there. I am no doctor and i am not trying to diagnos anyone, i am just looking into some things i have read and conversations that have been lobbed out by my doc to see if there is anything worth checking on. Robynn makes a good point about if it was that easy they would do it and i sort of believe that but now that i come to terms with how doctors and neurologist see this condition, i am believing that they feel it is very manageable once they get our anxiety in check. i believe that is the most important piece in the beginning but i also think they discount some of the physical issues that come and go with the excercise intolerance and generalized fatigue and the days of leg cramps. to me this stuff is real, it isnt stopping me from doing things but it does dimminish some of the desire, i can deal and am happy to go on my merry way, but i won't BS anyone, i would love to know what it is and then figure out a path to manage it better than saying (it is what it is) IF thats where it takes me then hey i still feel fortunate but i have a little fight left before i take that approach, and it is only my opinion. thanks for the relies.BW
 
BWsounds like you may be onto something- as like you have pointed out-as the good DR octopus also has- they tend to say stress-and virus or autoimmune- OK i can buy all of the possibilities- like you say if it is a cause of the Herpes virus then which type? Symplex or ?iteresting thought but wouldnt you think some one would have tried that by now? maybe not- but its a good question- i agree the twitching is one thing but the sensory and pain and perceived weakness/muscle ache really is what gets to mesince this post i have gone on the internet and done about 4 hours of research on just that the herpes zoster and Heptia (i think) but it does sound very plausable- you definitely may be on the right track- i think your question on anti-virals would be best answered by someone that knows they have shingles perhaps- i dont know do they prescribe anything for shingles?thanks D
 

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