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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Muscle Twitching and Lyme Disease
- Thread starter StephG22
- Start date
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..
eric
eric
stevenpaulo
Well-known member
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.
Steve.
Steve.
JohnnyRotten
Well-known member
Good link. Thanks eric.
I have another link. I didn't know there was a southern type of lyme-like infection:
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.
I have another link. I didn't know there was a southern type of lyme-like infection:
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.
stevenpaulo
Well-known member
Hello Eric.
Sorry you didn’t get the jist of what I was saying. It was StephG22’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 StephG22 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 StephG22, 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.
Sorry you didn’t get the jist of what I was saying. It was StephG22’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 StephG22 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 StephG22, 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.
As a syndrome with some signs and symptoms but a lot of uncertainty as to the underlying physical triggers and mechanisms I think we should stay open as to the possibilities, related conditions, etc.. Eric can certainly be a little relentless with his message, but I have to say I think he is right about the appropriateness of the topic.
And, like StephG22 (I think it was) our tolerence, even support of, those people whose problem is not their BFS, but their fear-of-*** is significant here. We don't send them packing to a more appropriate list (e.g. health anxiety, OCD, etc.) -- but in fact welcome them heartily. Even though it means that those of us who have BFS but not fear-of-*** have to plough through all the messages of iterated fear and comfort looking for BFS-specific discussion. I don't mind though; early on I had a few weeks of fear-of-*** myself and this list *was* a comfort back then.
And, like StephG22 (I think it was) our tolerence, even support of, those people whose problem is not their BFS, but their fear-of-*** is significant here. We don't send them packing to a more appropriate list (e.g. health anxiety, OCD, etc.) -- but in fact welcome them heartily. Even though it means that those of us who have BFS but not fear-of-*** have to plough through all the messages of iterated fear and comfort looking for BFS-specific discussion. I don't mind though; early on I had a few weeks of fear-of-*** myself and this list *was* a comfort back then.
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