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Re: respect

Postby dave y on March 11th, 2005, 4:59 am

eric wrote:with all due respect I think that this board is a board of no hope, a board that tells everybody that they will be ok even though they are clueless to what is going on ,I told you that face twitches are seen in tick born and infectious diseases,slaven balen in my opinion has a problem, neuro's know nothing about tick born disease and that is a fact and that is where alot of people on this board are stuck.if your bfs was benign why are you on this board?why do you try to kill other peoples hopes and health? why do you think that you are going to find the answer in some medical literature?

DO YOU REALLY FEEL THAT YOUR BFS IS BENIGN?
the above is the question of the day and you must answer it truthfully, i feel that you are in conflict..



Interesting! Compliments, Eric, for exposing my diabolical plot to "kill other peoples hopes and health" and for convincing me after six years of twitching that they are not benign thanks to your astute observation from afar. After all, why would any of us be on this board if they were not malignant? I am on this board. Therefore my twitches are not benign. Makes sense to me! (but only when I'm 'shrooming).

Why is it always the lyme disease crowd...?
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it is possible

Postby eric on March 11th, 2005, 7:14 am

you need a doctor where you are to call here and get guidense,
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ive had it fifteen years balen

Postby eric on March 11th, 2005, 7:42 am

yes you can but you must get treatment in high dose antibiotics.
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Advice concerning Lyme, etc.

Postby Davey on March 14th, 2005, 3:32 pm

Slavin Balen wrote:

Due to all tests, lab exams, several Neuros and other doctors I am almost 100% sure in LD etiology. Nobody believe me except you Eric, Stephanie... I have an appointment 3/24 in Slovenia with one of their most prominent LD specialist.
My eyelids twitch a lot, tingling & pins and needles on my face, 24/7 twitching in legs. No weakness; I think so.
I heard that is impossible to cure patient after 3 years of tick's byte!?


You say that you are almost 100% sure of LD etiology, but as you implied that "several Neuros and other doctors" don't think LD is the cause. Why are you sure? Are you a trained physician? I don't know how many doctors you have seen, but if I was you and several neuros and doctors don't think it is LD, then I would accept this exclusionary diagnosis.

In your initial post you wrote:

In August I've done Elisa, PCR DNA, Echo and Polio test; all twice. Lyme desease ruled out. I doubt on it because I'm living in VERY infective area and were bitten 2-3 times two years ago. I read things about LD and I'm thinking that my problem exists due to borrelia burgorferi exposure. In September legs cramps again. After that I never felt cramps. New EMNG done in another country by another specialist. The longest exam ever (one hour and 45 minut.). In October one more Neuro doctor. She is top specialist in NMD in my town. She is convinced that I am nervous and stressful person. Another round of Klonopin.
In December eyelid twitching increased plus needles and pins on face. In February 2005 I can feel mild rectal twitching (sic!). Last exam were 7 days ago (normal).

What happened BEFORE twitching:
In 2002 I was 3 times bitten by infective ticks. Late this year for the first time in my life I can feel dizziness, tinnitus, vertigo. Fear of Morbus Meniere...of course nothing happened.


If you live in an area where tick-borne illnesses are common, then I would tend to believe that your Neurologists and doctors have seen many patients with tick-borne illnesses and are familiar with the symptoms, and would be able to diagnose any such illness.

You mentioned that in 2002 you were bitten 3 times by infective ticks. Did you experience signs of primary infection? (For instance, did the characteristic bulls-eye rash develop?) Did you remove the ticks and were they tested for LD, etc. and had positive results? Not all ticks carry the bacteria.

I'm not saying this to be critical or make light of your situation. But as I said earlier, if several neurologists and doctors ruled out LD, then I would be inclined to believe the diagnosis. If you feel strongly about the issue, I would keep your appointment with the LD specialist on 3/24. However, if the LD specialist rules out tick-borne illnesses, I would hope that you accept the diagnosis.

As for Eric's comment that facial twitches are indicative of LD, that is like saying a cough is indicative of lung cancer. Sure lung cancer can cause a cough, but so can the common cold, the flu, pneumonia, reflux and aspiration, etc. Facial twitches are a sign of irritation of cranial nerves, which can be caused by a variety of maladies. It is a nonspecific symptom.

One thing that consistantly appears in this forum is our refusal to accept the diagnosis that we are given by our doctors. It is my belief that many people who participate in this forum have hypochondriac tendencies, anxiety issues, OCD, etc. and need to seek mental help in addition to their medical treatment. I speak from personal experience on this matter, having been diagnosed and treated for GAD.

In the USA, doctors go to medical school, complete internships and residencies, pass their boards. They have extensive training. Sure they may sometimes make mistakes, but they are usually right on the mark with their diagnoses. Most cases don't require a second opinion, since they are fairly straightforward. In more complex cases, there is always the option of obtaining a second or third opinion. However, when we seek five, six, seven opinions, and continue to doubt medical professionals, then there maybe deeper problems here. Although I am not familiar with the training requirements in Croatia, I am sure that you can't get a medical license out of a Cracker Jack box.

So, Slavin, I recommend that you should proceed with your trip to the LD specialist. If you are found to have LD or another tick-borne illness, then the entourage of doctors you have seen were wrong, which is a seriously bad statement of the quality of care you have received. I will also stand corrected. However, if the specialist says you don't have this and you continue to doubt the diagnosis, then you need to seek mental help.
Cheers,

Dave

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lyme

Postby eric on March 14th, 2005, 7:02 pm

the person who has to seek mental help is you davey and i mean that in a nice way...you dont understand lyme disease or any other disease for that matter,you dont need a rash for lyme,most doctors have no idea about it and dont care because they dont have to treat it,what do you think happens to people who do have infections like lyme,have you any idea?well let me clue you in and listen carefully class just started,lyme disease is an infection of the central nervous system, its effect are manifested by invasion of the brain and spinal cord, when one gets lyme disease it manifests in differant ways, no to cases are alike as they effect differant parts of the system,this disease is nicknamed the great imatator just like its cousin syphilis, transmited by tick,horse fly,mosquito and other vectors,late stage infections can resemble alot of differant illnesses and I told you before that the national institute of health has a publication out telling drs to check for lyme when they dont have an als diagnoses nailed down or when they cant figure the symptoms out,do you think that I make all this up?do you think that i get a kick out of people suffering?do you think that i would sit around and tell slaven that I think that he is ok when i here he has twitching of the face,if its irritated nerves then what is irritating them?thats what you said in your last post,if there are irratated nerves do you think that this is a benign condition?did you know that lyme disease is a clinical diagnoses?did you know the tests were not made for diagnosis? then if that is true why do doctors use them to check you for lyme because they dont know, gad,anxiety,ocd,depression,hypochondria and all the mental states can be and alot of the time are caused by lyme when it is way over the top..infection can and does cause bfs..and on this forum instead of looking at what can be wrong you guys stick your heads in the sand and that is not good, there is something wrong and you know it.. the question is it really benign..trust your doctor...
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benign?

Postby Davey on March 17th, 2005, 7:46 pm

Eric -

Not every case of peripheral neuromuscular hyperexcitability is Lyme disease. Slavin may or may not have Lyme disease. That is why I suggested that he go through with his visit to the doctor who specializes in treated Lyme disease. However, if this doctor says that he doesn't have Lyme disease, and he should accept the diagnosis.

Benign doesn't mean that everything is fine. Benign means not malignant. Malignant means highly injurous or a pathological growth that tends to spread. Benign fasciculation syndrome is a term that has been given to a condition that displays motor and sometimes sensory nerve dysfunction of unknown etiology. No one said that BFS is fun or easy to live with. Research is ongoing to determine the cause of BFS, but current research points to autoimmune response. Autoimmune responses can be triggered by infections other than Lyme disease. However, autoimmune disease aren't always triggered by infections.

You seem stuck on Lyme disease. Sorry, I have BFS, but I don't have Lyme disease. I've never been bit by a tick. So, how do you explain my BFS? My neurologist thinks it is due to my low thyroid, and there are numerous studies that link subclinical hypothyroidism to neurological problems. Does he know for sure? We'll find out once my thyroid gets in the normal range.

Sure, BFS is a sign of irritated nerves. Nobody's body works perfectly all the time. Some people develop chronic conditions. Some people have irritable bowel syndrome, others have acid reflux, others arthritis. I suppose you're going to tell me that Lyme disease causes all of those too. Slavin has facial twitches? So do I.

Should I seek mental help? I don't think so. I don't understand Lyme disease? Maybe so, but what makes you such an expert? Clinical diagnoses are made with the help of lab tests. Lab tests confirm or exclude some diagnoses. It would not make sense for a doctor to say I was hypothyroid if my thryoid tests came back normal.

I participate in this forum to try to help people cope with BFS. When I see people go from doctor to doctor to doctor to doctor, then I start to wonder about the mental state of the person. There are times when opinions differ. Fine. You and I can disagree.

With regards to what you said in an earlier post:

with all due respect I think that this board is a board of no hope, a board that tells everybody that they will be ok even though they are clueless to what is going on ,I told you that face twitches are seen in tick born and infectious diseases,slaven balen in my opinion has a problem, neuro's know nothing about tick born disease and that is a fact and that is where alot of people on this board are stuck.if your bfs was benign why are you on this board?why do you try to kill other peoples hopes and health? why do you think that you are going to find the answer in some medical literature?


A board of no hope? Many people come here afraid that they are going to be dead in 2 years from ALS. How can you say we don't offer hope?

Do we tell everyone that they're okay? No, we tell them they have BFS. BFS is a chronic condition, with a variable course. It can be caused by an underlying condition that is more serious and if people experience symptoms that suggest a change or worsening of symptoms, we encourage them to see a doctor.

Clueless to what's going on? I disagree. On the whole, I think most of us have a good idea what is going on, despite not being trained medical professionals.

Neurologists know nothing about tick-borne diseases? That statement is a joke. Lyme disease has neurological symptoms. I'm sure that any well-trained neurologist knows what they are.

If our BFS is benign, then why are we here? To help each other cope with an annoying, sometimes painful, malady.

Why are we killing hope and health? I don't think we kill hope. I think we give hope by providing resources and support. We don't kill health either. The subject of Lyme disease has been brought up on this website many times before Slavin arrived. Lyme disease is a legitimate possible etiology for peripheral motor nerve dysfuntion, but not the only one. I don't think anyone on this website has ever discouraged anyone from asking a doctor about it.

Let's just wait and find out what Slavin's Lyme disease specialist has to say.
Cheers,

Dave

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Postby eric on March 17th, 2005, 10:14 pm

davey id like for some of the lyme people to come over to this chat room and explain to you that there is a couple of things that you dont under stand about lyme disease,
1)you dont allways get as rash
2)the tick is not the only vector
3)neuro dont understand lyme disease
4)testing is very light and not accurate with many false negatives
5)insurence companys dont want to treat lyme disease
6)most doctors gp dont know the signs or symptoms of lyme disease
7)lyme disease is allover the world in almost every country
all of the above is true
im not making this up
talk to some of the lyme patients on other forums and you will see,
if you dont think you fit many others on this bfs forum will fit
Im glad to say that many people on this forum have there health back and dont post and when they look at how im fighting for lyme they say no one under stands but keep fighting.. so there I am trying to help people see something that they dont...
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Postby Slavin Balen on March 18th, 2005, 3:39 am

Eric and Davey,
I read your posts. In my opinion you're both right. Maybe some kind of mental help might be helpful for me.
GP in my country don't know nothing about tick born deseases. Insurance companies never heard about it. Some Neuros know, of course, but they don't know treatment. Actaully Croatia, capital town Zagreb and specially my area is most infected place in Europe. The first case was diagnosed in 1987. The fact is that I've been bitten 3 times in 2002 (spring and summer). After first bite (embedded tick, normal size, no rush, no erythema migrans) I took azytromicin (Sumamed by PLIVA; our Croatian drug available in States).
After second bite (embedded tick, normal size, no e.m., no fever or flu like signs) I've done nothing. The third one was VERY UNUSUAL tick I've ever seen in my life (I'm living with pets all my life and I know how ticks look like in my county). It was very little one (probably "nymph" kind), I got erythema migrans (1" in circle) and flu like symptoms during next couple days. Then I done nothing. I didn't take any antibiotics or any other drugs.
My mistake. Mea culpa!
I've been verynervous and upset those days, my parents died, I left my home etc. I've forgotten about ticks. But after 2 months my calvary starting with epididymis infection (treatment with large penicilin doses), vertigo, dizziness, tinnitus. Menniere syndrom ruled out. Nothing happened during 2003. Fasciculations started last March with eyelid twitching. In my previous posts I have described tests and exams which I done last 12 months.
Last few weeks I have a lot of little twitches on my eyelids, around my lips, in and on my . Pain in my back, arm, right heel.
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Slavin's plight

Postby Davey on March 18th, 2005, 5:05 pm

Slavin -

You have been through a lot, my friend. I wish you the best. I do think that given your history of tick bites, you should continue with your visit to the specialist on 3/24. I hope he/she has an answer for you.

Every case is different. I have seen a lot of people frozen with the fear of ALS. Despite reassurances from their doctors, they continue to torture themselves. This isn't healthy. Stress and anxiety cause a variety of health problems. When I see a person who refuses to accept a diagnosis despite seeing numerous doctors, then I wonder about their mental status.

I don't believe Eric's assertion that doctors know nothing about Lyme disease -- at least in the USA. Cases of Lyme disease have increased in the USA, and there has been an increase in media reports as well as alerts posted by the NIH and CDC in the USA. I don't think doctors, especially those in tick-prone areas in the USA, have ignored Lyme disease. Vector-borne pathogens have, in general, had increased attention in the medical community. Examples are West Nile Virus, Hanta virus, bubonic plague, etc.

Eric made me laugh when he made the following statement:

talk to some of the lyme patients on other forums and you will see


Should I believe the lyme patients in forums for lyme disease any more than BFS patients in forums for BFS? I don't think so.

Eric can say that it might be lyme disease, and that we should consider the possibility. Fine. But for him to make statements like:

I think that this board is a board of no hope, a board that tells everybody that they will be ok even though they are clueless to what is going on

and
why do you try to kill other peoples hopes and health?

and
and on this forum instead of looking at what can be wrong you guys stick your heads in the sand and that is not good

and
why do you think that you are going to find the answer in some medical literature?


is without basis.
Cheers,

Dave

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Postby eric on March 18th, 2005, 10:46 pm

why is that without basis?also do you understand that some bfs is really late stage lyme disease! if you dont believe it then dont but I will continue to post to help the people who believe it and want to do something about it. if I cant stop twitching then so can alot of people on this board,
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Postby eric on March 18th, 2005, 10:47 pm

Slavin Balen wrote:Eric and Davey,
I read your posts. In my opinion you're both right. Maybe some kind of mental help might be helpful for me.
GP in my country don't know nothing about tick born deseases. Insurance companies never heard about it. Some Neuros know, of course, but they don't know treatment. Actaully Croatia, capital town Zagreb and specially my area is most infected place in Europe. The first case was diagnosed in 1987. The fact is that I've been bitten 3 times in 2002 (spring and summer). After first bite (embedded tick, normal size, no rush, no erythema migrans) I took azytromicin (Sumamed by PLIVA; our Croatian drug available in States).
After second bite (embedded tick, normal size, no e.m., no fever or flu like signs) I've done nothing. The third one was VERY UNUSUAL tick I've ever seen in my life (I'm living with pets all my life and I know how ticks look like in my county). It was very little one (probably "nymph" kind), I got erythema migrans (1" in circle) and flu like symptoms during next couple days. Then I done nothing. I didn't take any antibiotics or any other drugs.
My mistake. Mea culpa!
I've been verynervous and upset those days, my parents died, I left my home etc. I've forgotten about ticks. But after 2 months my calvary starting with epididymis infection (treatment with large penicilin doses), vertigo, dizziness, tinnitus. Menniere syndrom ruled out. Nothing happened during 2003. Fasciculations started last March with eyelid twitching. In my previous posts I have described tests and exams which I done last 12 months.
Last few weeks I have a lot of little twitches on my eyelids, around my lips, in and on my . Pain in my back, arm, right heel.
must
slavin you have lyme disease in my opinion..
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slaven balen

Postby eric on March 22nd, 2005, 7:31 pm

let me know if you need the test kits from igenex sent to you in croatia,
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Look in the mirror

Postby John_JR on March 23rd, 2005, 1:26 am

dave y wrote:Why is it always the lyme disease crowd...?


It’s true that many hypochondriacs flock to the lyme crowed because quite frankly the lyme symptom list is broad enough to encompass just about any ailment under the sun. Unfortunately, that IS the very nature of lyme in that it is a systemic infection. This causes a disservice to the true lyme community because people like you pigeon-hole everyone in the lyme community as crack-pots. This point is emphasized in your quote “Why is it always the lyme disease crowd”.

Truth of the matter is that BFS itself is a broad stroke of the brush. It’s almost as wide open as any other not fully understood disease. Therefore as much as you dislike the “lyme crowed” you can’t discount them.

As far as my story, I have not YET had a positive lyme result (two were not enough bands present). So you cannot stereo type me as one of those “lyme people”. My symptoms match many of you on this board, so I do consider myself a fellow BFS sufferer. However, I do have one slight twist on my story. I some how “transmitted” BFS to my wife of 5 years. To be very clear of what I just stated, my wife is now experiencing the EXACT SAME symptoms as I have been experiencing for the last 15 years! Twitching (everywhere – tongue, face, legs, arms), shooting pains (everywhere), numbness, weakness, buzzing sensations, the list goes on. Do I think its lyme - highly likely? Do I think it is related to an infectious disease – definitely! I mean I’ve gotten to the point now that this is either lyme or some new communicable disease. Rhetorically speaking, maybe I should just go out and have unprotected sex to “spread” the awareness of this new mystery disease. Who knows, maybe someone gave it to me that very same way.

Either way, my points are these: We truly don’t know what we are all dealing with yet in regards to BFS. For me, the jury is still out. No single person is right or wrong here (including me), so let’s not discourage the concept of Open Dialog by stereo typing people or groups. Frankly speaking, no one needs your help in discerning who's or what posts on this forum are fact or fiction. I’m mean, if you have to go out of your way to discredit other peoples posts and quotes, then you are assuming the rest of us here obviously cannot do that for ourselves. If someone makes an outrageous claim here, so what. We must be all a bunch of gullible idiots, except you! And on mediums such as electronic bulletin boards, I believe there’s no such thing as bad advice unless an individual claims to be an expert or professional as in a real medical doctor. It’s the Internet for heavens sake! Why am I writing a full-page gripe post right now when we should be talking about BFS and comparing each others notes, yes even the notes of people who do have Lyme? BFS itself is very open ended and has a multiple range of causes and symptoms (people twitch for different reasons here), which means yes, you are going to have a mixture of lymies here because simply put, they twitch too. Could you image a poor lyme infected individual who wonders on to this site, a saw no mention of lyme as even a possibility? You think you’re doing a great service to the fellow members on this site by downing the “lyme crowed” and other so-called crack-pot crowds, but you’re really doing a greater disservice to those who actually might need to be pointed in the right direction. After all, if someone ever did get an actual lyme diagnosis, they would most likely leave this board and go to a lyme-specific board where they would find better help. Isn’t this what you eventually want anyways? Eric, as passionate as he might get sometimes, is the only one here daring to say the dreaded “L” word strictly in the name of awareness. And as predicted, he gets hammered by someone like you.

You know what?? I just became the very thing I accuse you of... For that, I apologize to the rest of the members on this board who have read this post. Unlike you however, I’m confident that everyone else here IS able to judge all posts on their own accord and come to an intelligent conclusion. And if you want to rebut, quote me, or start a flame war, don't bother, I won't facilitate it. I said what I said, and that's all I'll say about it.

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Postby eric on March 23rd, 2005, 8:01 am

i was at my lyme doctor and they have found the three vectors of lyme. mosquito,flea,tick
this is why so many people have it without a rash..
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Postby Slavin Balen on March 23rd, 2005, 4:13 pm

Yesterday I visited one of my Neuros and it was quite well. Despite of all my recent problems; fasciculations wide spread, light weakness in right arm, strange sensation and numbness with light cramps in right leg, aching right heel, desperate mind; she told me I'm pretty O.K. with good neurological status and fine muscles. She recomended a lot of exercising, Omega - 3, positive thinking and avoiding Internet (meaning our Forum). I asked her do I have ALS or something else and she told me NO!
She said something very interesting. Too much vitamin E (in mega doses) are not good (in my case). Excessive bruises on skin may be caused by large doses of vit. E because it works like anticoagulant. In fact, it happened to me 2 years ago but I didn't know that was the reason. It's better to take vit. E from natural sources. Tomorrow I'm going to Slovenia. I have an appointment with LD specialist. We shall see..
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