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Information about how to manage or reduce the severity of BFS symptoms

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Postby eric on March 20th, 2005, 10:51 am

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Postby Stephanie on March 20th, 2005, 1:20 pm

Has some good facts and provides someone w/hope who's been diagnosed w/als. It soesn't say if he's getting better on AB's or if his twitching has stopped (that's what I'd want to know since I have Lyme and don't want it to progress like his case).
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Postby eric on March 20th, 2005, 3:11 pm

would you like me to sent you an igenex kit?
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Postby Stephanie on March 20th, 2005, 3:31 pm

I've already been tested by Igenex through my llmd, thanks.
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Postby eric on March 20th, 2005, 3:47 pm

just so you know my twitching stopped but i have along way to go,so just hang in there.
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Postby Stephanie on March 20th, 2005, 4:34 pm

How long on AB's before it stopped? Which AB's? After 2-3 months on AB's my twitching is the same if not worse. Now I have spasms. I'm going to try one more round and then if that doesn't work I'll assume the twitching is not from the Lyme in my case.
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Postby dwl on March 20th, 2005, 4:59 pm

Hey guys, don't forget that this stuff has NOTHING to do with bfs - there is absolutely no link between als or Lyme disease and bfs. I can't help feeling that postings like this are completely missing the point.

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Postby Stephanie on March 20th, 2005, 5:18 pm

I don't agree. Muscle twitching can be caused by many, many things. Lyme is just one of them. I'm not even concerned about als here. Is it "missing the point" to post about electrolyte imbalances or thyroid problems or anxiety or all the other things we post about to wonder about the cause for our twitches? BFS is a general term for benign fasiculations that we don't know the cause of. Lyme disease shouldn't be singled out as "taboo" on this forum while every other possible cause for fasiculations is ok to discuss. I am not pushing my views on anyone here and never have. Just asking questions.
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Postby Stephanie on March 20th, 2005, 5:58 pm

Also, I, along with most of us are very supportive toward people who come on this forum thinking they have fasics caused by als. I am afraid I have fasics caused by Lyme. Should I get no support?
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Postby eric on March 20th, 2005, 6:08 pm

It took 15 months to stop, doctor said it will take along time, i was at my sons lyme doctor and one of the kids has been on for three years and still slowly getting better, so this is a long term thing with maybe five years as a target for treatment, when treating tb they do it for two years so it will take some time with improvments made very slowly..
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Postby stevepaul on March 21st, 2005, 8:17 am

Someone posted recently "so what causes BFS" its had 70views and not one of the so called possible causes that people talk about, so there's not much support there then.

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could you explain better

Postby eric on March 21st, 2005, 6:09 pm

stevepaul could you explain better what you said.
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STARI

Postby John_JR on March 22nd, 2005, 1:22 am

Good link. Thanks eric.

I have another link. I didn't know there was a southern type of lyme-like infection:

http://www.cdc.gov/ncidod/dvbid/stari/

This is right off the CDC government website. I grew up in Florida so this might explain why I've been having such a hard time getting a positive LD test.
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Postby stevepaul on March 22nd, 2005, 10:08 am

Hello Eric.

Sorry you didn’t get the jist of what I was saying. It was Stephanie’s reply to DWL that prompted me to reply. She mentioned that there are various causes of fasciculations and many people have put their theories forward, such as weight loss, exercise, stress, Lyme, autoimmune, antibiotics, m**t p** (nice one Ish) etc. It would appear both you and Stephanie know the cause of your fasciculations and I am pleased for you both, but there are not many on this forum that know the cause of theirs. There was also the mention of being supportive towards people and I know that Stephanie, along with many others are. So when the question “so what causes BFS” was asked I sat back and waited to see the replies and the total as far as possible cause, reached the grand total of zero with only 70 people looking in. Now considering the amount theories plus lots of tea and sympathy floating around, I was surprised that this person, who asked a very good question, got so little response.

As to the cause of my PNH and having NMT I feel like the odd one out on here, having tested positive for VGKC antibodies I have to go along with it being autoimmune. Its just a pity that more people haven’t been tested for these antibodies, it would be interesting to know how many have them as this could lend more weight to it being autoimmune. I also think that it is possible to get confused about cause and trigger e.g. cause Lyme, trigger ticks.

Regards Steve.
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Postby Stephanie on March 22nd, 2005, 1:23 pm

I don't know the cause of my fasics since, although I have had Lyme, the treatment hasn't diminished the twitches. I just know that Lyme can cause fasics and I am still pursuing other causes. I may never know.
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