autoimmune proccess definate (doctor)

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autoimmune proccess definate (doctor)

Postby eric on September 25th, 2004, 8:56 am

I was very achy for 2 years while i had bfs , my doctor gave me a drug to stop the immune system from attacking my nerves, this has stopped the achyness and tired feeling in the muscles and allowed me to return to work. the antibiotic is the latest and it is low dose and Im am feeling great...
he said it will take years for the body to rebuild the damage from the imune system going crazy.
so far I feel great!
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Postby Floater on September 25th, 2004, 10:34 am

what is the name of the antibiotic or is it an anti-viral??

and how much about bfs does your doctor know?? that your immune system is attacking your nerves. and what antibody did he discover that led to this theory. please i must know
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Postby garym on September 25th, 2004, 11:54 am

Eric,

antibiotics don't work for autoimmune disorders. If so, people would be receiving them for conditions such as lupus. If you are being treated for lyme with antibiotics just come out and say so. Don't try to deceive people by calling it an autoimmune disorder. Just so you know, I'm one of the people on this board that support your right to preach about lyme as I'm sure there are some here that have it, but posts like this cross the line in my opinion. The last thing we need are for people taking antibiotics they don't need. further, there are documented cases of certain antibiotics causing many of the problems people here suffer from.

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Postby eric on September 25th, 2004, 5:35 pm

that is true that some people here suffer from bfs after some sort of fever. some think that is is caused by antibiotics and I would have to say that I took levaquin and the bfs was much worse. i stopped taking that antibiotic. as far as autoimmune? that is the truth, the spirochetes are sitting in the nerves roots , the immune systems sees the spirochete at some point and trys to kill it but the spirochete has rapped itself around another good bacteria that has just been killed. the immune system starts to attack the good bacteria thinking that it will kill the spirochete. this is lyme autoimmune and I have this and as a matter of fact the bands that are have are autoimmune in nature. other bands cause arthritis and so on. I dont know why I constantly get attacked when i am only telling the truth. some people on this forum think that this is brought on by all sorts of things: asperatame, magnesium def, low b12, anxiety, depression,the list goes on but I dont see anyone attacking them. I think that when I get these emails that are trying to ridicule me I can only say one thing that I must be right and that is why you are upset.
as for you I do believe that if I am correct that this all started after a fever and if that is true then think about why bfs might follow that.
this disease is in my case autoimmune and if you dont believe it then why when i took the drug malarone did the aching stop?and why do I have the best doctors in the world and why does canada have there doctors here on long island to learn about the effects of lyme because it is there and that is it.
I have never realized how many people are so ingnorant that they choose to shoot me down when there are a host of people on this forum that are presenting here instead of the lyme chat boards because they dont know any better. seven people have been helped and are on there way towards recovery. they dont post here anymore, but me Im trying to help people and sometimes I say to myself "why" . I guess the old saying that a good deed never goes unpunished is the best line to some up posting on this board.
eric
ps . by the way the only person who is bieng decieved is YOU.
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Postby LeeNC on September 25th, 2004, 6:27 pm

eric, please don't think you're being totally dissed here. It's partly a difference in style. A lot of us are more systematic in our thinking, and we are trying to piece stuff together, like you are, but we require more evidence.

We have various theories on specific incidents that caused/triggered our BFS, but who's to know whether the timing was coincidental? Similarly, we can't tell whether specific approaches alleviated our BFS, or whether that too was merely coincidental. For some lucky folks, BFS just fades away - whether or not we tried antibiotics, antidepressants, antivirals, CBT, magnesium supplements, meditation, Zoroastrianism....

I appreciate your opinion as much as anyone's.

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autoimmune

Postby eric on September 25th, 2004, 8:06 pm

my bfs is absolutley autoimmune in nature as I was told by my doctor .
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Postby dont on September 25th, 2004, 9:22 pm

This may be a dumb question but if your BFS is caused by Lyme how can it be BFS? BFS is benign and lyme doesn't seem to me to be benign. I'm not trying to be a smart a_s_s. I'm just saying if you have lyme then don't you just have twitching from the lyme and not necessarily BFS???
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Postby Stephanie on September 25th, 2004, 9:29 pm

Lyme disease (among other things) can cause twitching so it wouldn't hurt to check for it. Antibiotics treat neuro lyme, but not autoimmune diseases. Only some AB's cross the blood-brain barrier. I live in an area where Lyme is common. My whole family has had it, including the dog. I've had it twice.
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Postby dont on September 25th, 2004, 9:59 pm

I really have no reason to believe I have Lyme I just was thinking that if the twitching is from Lyme then it's just that from Lyme and not BFS
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Postby garym on September 25th, 2004, 10:15 pm

Eric,

Just call it what it is in your case, neurologic lyme. Don't mislead people talking about an autoimmune disorders. True autoimmune disorders aren't treatable with antibiotics, lyme is. I believe you that there are people here suffering from lyme, but I also believe there are many here that aren't. Heck, at one point, I was nearly convinced I had it because nothing else made sense. Two courses of antibioitics (doxy, and augmentin) later with no herx, I moved on with the search for the cause in my case.

So I'm not trying to discredit you or your cause (lyme awareness), but please keep it transparent. It is what it is, and that is neuro lyme, and I believe every member of the board should be evaluated by a dr. to rule it out (no matter how incompetent most drs. are in regards to lyme).

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My input

Postby John_JR on September 26th, 2004, 1:07 am

dont wrote:This may be a dumb question but if your BFS is caused by Lyme how can it be BFS? BFS is benign and lyme doesn't seem to me to be benign. I'm not trying to be a smart a_s_s. I'm just saying if you have lyme then don't you just have twitching from the lyme and not necessarily BFS???


Dont,

Let me see if I can take a shot at this:

(B) "Benign" meaning you won't die from it.
(F) “Fasiculation” as in muscle twitching/shaking.
(S) "Syndrome" is usually given to conditions where the underling cause is yet unknown.

Therefore, if you twitch and don't know why, you can classify yourself under BFS. However, if you twitch and are Lyme positive, then you can classify yourself under NLD (Neurological Lyme Disease). Therefore it is perfectly possible for someone who really has NLD, but classify themselves under BFS because they just haven't gotten that positive diagnosis yet. Given that Lyme and related Mycoplasma infections are so hard to detect, one can deduct that there may be many individuals suffering from NLD and think its just plain BFS. Oh, and believe it or not Lyme is classified as a chronic but benign condition.

LeeNC,

Great post! I wish more people here had your mindset and respected open dialog.

Garym,

One thing about lyme, you can’t rule it out - you can only rule it in. If you don’t experience a herx, or your tests come back negative it doesn’t diminish the possibility you could have Lyme or related infection.

Now for my 2 cents,

I agree that most if not half of all BFS suffers here are based on an undetectable infection.
Lyme? Highly probable.
Something new – yet undiscovered pathogen? Highly probable too.
Human to human transmission? Me and the wife are living proof!

To all fellow BFS’ers, I’m glad too that I don’t have ALS, MS, or MD, and that I can “move on” to more important things in life. That scare has long passed. BUT, I’m not going to settle for something that ends in “Syndrome” either. Come on! What a cop-out! To be facetious, that’s like going to the doctor because your leg hurts and the doctor sends you home with a bottle Motrin saying you have “Hurt Leg Syndrome”. Don’t give up and by all means don’t settle.
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Postby jcavan4125 on September 26th, 2004, 7:08 am

John,
I understand what you are saying and I agree that it is frustrating, I just want to make sure we keep ourselves accurate. The word syndrome (according to the Bantam Medical Dictionary) doesn't mean that the cause is unknown; the cause may be known or unknown. What makes an ailment a syndrome is that it includes a group of signs and symptoms, that's all. There are many ailments the cause of which are unknown that are not classified as syndromes such as MS, SLE, Sarcoidosis, etc. Likewise, there are syndromes that the cause of which are known such as Toxic Shock Syndrome, Reyes Syndrome and others.
I'm not trying to be picky or start an argument; I just think that in order to maintain credibility we need to be accurate on the board so that everyone (especially very anxious members or new members) can feel that the information found on this board is valid. That way when crackpots and others post stories that are obviously false (as happened recently on the board) members can feel assured that the information they have come to know from the board is in fact correct.
Again, not a huge thing, but I just thought I should clarify it.
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Let's be clear

Postby John_JR on September 26th, 2004, 4:07 pm

jcavan4125,

I understand your point fully. Especially about credibility, which is why I won’t let this one slide? Lets not misconstrued what I said. I never defined "syndrome". I believe the phrase I used was "is usually given", which is not an absolute by far, and if you read the entire statement, I am referring to a statistical classification of the word. A grouping if you will. Reasoning? Well historically, if you look at most, (here we go again) most syndromes, at the time of their discovery, the root cause(s) were not fully understood or known. Take one example (although I could rattle off many more) AIDS. We called it AIDS long before the cause (HIV) was discovered, and still do. Just because we now know what causes AIDS, you just can't drop the "S". Is the horse dead yet??

Sorry, usually I don't rehash my own arguments, but as you put it, in the name of accuracy, I never defined the word "syndrome". Contextually, I can see why you thought I did because I did define the B and F terms, but not S. I know it's tempting for some to get caught up in semantics, but I don't want it to detract the main concept of my point. Nothing personal jcavan4125, just trying to get my train back on its tracks after you just derailed it.
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Postby LeeNC on September 26th, 2004, 4:51 pm

The horse says Aaaargh! He's dead, Jim! :D
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Postby jcavan4125 on September 26th, 2004, 6:58 pm

Sorry John,
I didn't mean to derail your point, I really wasn't trying to! If I came off sounding like I was being obsessive/compulsive about nothing, I probably was. It just struck me as the kind of thing that could have been misconstrued; obviously it was...by me! My mistake. I'll bury the dead horse now!
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