Viruses Likely Culprit for BFS Symptoms

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alyLeoNCali

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In defense of Eric, sort of. Viruses are so tricky that doctors can't possibly keep up with all the mutations of them. (Think of the guessing game every year when flu shots are developed.)

While Lyme Disease may -or may not- be the SPECIFIC trigger for our BFS symptoms, I firmly believe viruses are the culprit. So Eric's suggestion to get checked for Lyme is not so far off. Whether you come out positive or negative for Lyme hardly matters. Antibiotics don't always treat Lyme, and BFS isn't always caused by Lyme anyway. Thing is, we twitch and we don't know why.

Eric, you have a strong belief that Lyme is the offender. If y'all think you have lots of Lyme Disease symptoms, get tested. I don't. I have a slightly broader but just as strong belief that a variety of viruses are the offender. We'll just keep brainstorming til some fancy researcher takes it on!

--alyLeoNCali
 
has anybody had a western blot to rule out lyme? if so did you get any bands? if you did what were they? if you got anybands specific for lyme you have been exposed. they will tell you your test is negative however. it is possible to be exposed to it 20 years ago and to have problems on a later date. my friend who has been told he has chronic fatigue,avoidence dissorder,personality change in fact had lyme. he has never been exposed as he can recall. he had a western blot and had the same bands as i have. he is currently on doxy and gradualy improving. the new test for any disorder of the brain is a spect scan that can clearly show the effects on the brain, it is said to be 95% accurate for late stage lyme. the symptoms of late lyme are: fasiciculations, face fasciculations, eye pain,increased floaters, coginitive impairment,tingling, sinus pulsing, vertigo, ataxia, feelings of panic,unreal reality, depression, wierd neuro feelings in the nerves, the back side of neck deep pain on the sides, subnormal body temperature, dry hands and skin, and the list goes on, there are many people who never knew they were bit as the tick is microscopic..
lyme disease is the great imatator as is it cousin syphilis. a disease that is hard to diagnose and even harder to treat. doctors dont want to help people with lyme because it presents a dillema to the insurence company. the reason is that they will have to pay dearly for all the people who have it as the treatment is long and expensive. if they diagnosed correctly everyone with lyme disease they would go broke. there are to many people and they know it. that is why they say that it can be cured in less then thirty days. also the doctor wont diiagnose lyme because he does not want to be liable. in this regard he will of diagnose as something like the common cold so he wont have to treat. by not treating he has avoided costly litigation down the road of you suing him. all the above it true. and that is why alot of people are suffering. james I dont know what you have but this seems to fit, everything seems not to fit, my cousin has als and you dont sound like him. by the way I want to stress that lyme in the uk is worse then in the united states and is mostly neuro lyme. anyway if you ever decide to get a western blot send it to igenix in ca, as they are the number one in the world. I wish you health..
eric
 
dwl:

Point well taken. My "firm belief" is just opinion, definitely not based on a scientific approach. I also have this distinction between "cause" and "trigger" I wanted to reiterate. (You know me, it's always long.)

So, first, I'll say...thinking of you and your new daughter. You are an experienced Dad, so you know life will be easier for you and the wife a few weeks from now! ....OK, back to cause & trigger.

Something CAUSED my BFS, and it was probably something a while back - maybe even a genetic predisposition to autoimmune stuff (which I admittedly know very little about). A couple of years ago, I had what I now know to be an isolated symptom of classic BFS - buzzing sensation in the bottoms of my feet. GP sent me to neuro. Passed a NCS. Neuro figured it might be the very beginning of peripheral neuropathy but assured me it was nothing serious. After a few months, it went away (or else I just got used to it).

But it wasn't until years later that something TRIGGERED my BFS - that is, raised the red flag and suddenly produced all the scary & annoying symptoms that got me to this board. My firm belief that a virus is MY trigger is that I suddenly got this slew of BFS symptoms (including a return of the buzzy feet!) within days of getting a bunch of bug bites (4 or 5 attached ticks and 3 dozen chiggers). Got swollen glands, felt exhausted beyond belief, then started twitching and shaking. A friend who was also an unwitting part of this bug feast came down a few months later with Bell's Palsy, which is believed by the medical profession to be of a viral cause.

There's a person on this board who reports starting with BFS symptoms after being stung by marine life; now that's an interesting cause - or trigger. Viral? Neurotoxin? Coincidence? I dunno!

--alyLeoNCali
 
bells palsy is of bacterial nature, you do sound as if you have lyme? what were the bands on western blot? also a negative western blot does not rule out lyme disease as per cdc ,
the buzzing you mention could be when the lyme bacteria enter the feet and travels up the nerves that is what i think was happening. fasciculations I guess are from the signal getting interupted.
eric
 
eric, this is utter nonsense. Bell's Palsy is currently thought to be due to the Herpes virus & is not bacterial. Not even a little bit.

All of which puts your musings on Lyme disease into perspective.
 
DWL,
Eric is not quite wrong. Bell's Palsy can be caused by LD (in third stage).
Confirmed by several specialists from Croatian's Infective Clinic. Unfortunately, I must to trust them because my town, Zagreb and northern Croatia, is one of the most infected place in Europe. Specialy my county where I'm living. I'm sure much more than England. I don't know why is so that but this is a fact.
Interesting, a few miles on the south of the downtown, across the river Sava, are much more less infected ticks.
My doctors mentioned that erlichiosis (?) bacteries can produce twitching.
Never heard before or read on Internet.
Sincerely, Slavin
 
If it's caused by Lyme disease then the diagnosis is Lyme disease and not Bell's palsy. Similarly if someone (e.g. eric) has twitching caused by Lyme disease then the diagnosis is Lyme disease and not bfs.
 
Hi David;

Can I ask, does your tongue twitch? And if it does, what kind of twitches do you get? I've had an annoying tingling/buzzing sensation for a few days now, that moves to different areas of my tongue and can sit there for a while. Can sometimes feel like it's got a hair or a bit of food sitting on it. When I check my tongue in the mirror (at rest) it's pretty much still apart from the odd bit of normal movement.
 
Eric;

David has been, to the best of my knowledge, told he has BFS. So he knows what he has. Also, you keep coming on here trying to tell us we could have Lyme. David and myself live in Glasgow, one of the biggest urban cities in Britain. We have tried time and again to tell you that Lyme is highly improbable for our location, being in a city ... with cars, high buildings, tarmac roads, pavements (sidewalks), etc. We don't live in the Highlands, so we're not in amongst grassy environments where these insects you mention could infect us.

I know you're only trying to help, but you can't seem to take no for an answer. Every post to someone, who's told you they COULD NOT POSSIBLY be exposed to ticks, horseflies, etc get's the same reply with each new reassurance thread or post: it's "Lyme, lyme, lyme".
 
Eric,
I know you are well meaning and trying to help, but your obsession with Lyme disease gives you tunnel vision. Could lyme be one possible trigger of BFS, maybe; but is it the likely culprit of the majority of cases...very unlikely! Lyme is not that easy to get. First, you have to be in an endemic area. Second, the tick Ixodes dammini (not a horsefly) usually has to be attached for at least 24 hours to transmit the sphirocete Borrelia burgdferi (not a bacteria or virus) which causes the infection. Third, neurologic involvement occurs in only 15% of infections. Fourth, when neurologic involvement does occur it is predominantly in the form of meningoencephalitis, a severe disease not mimicing BFS in any way.
If you would like to check my sources, they are Cecil's Textbook of Medicine and Mandel's Textbook of Infectious Disease.
I'm all for looking at possible causes of BFS, and more importantly possible treatments or cures; but, if the square peg doesn't fit into the round hole, then it is time to look at other possibilities.
 

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