As close to cured as I've ever come!

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

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As close to cured as I've ever come!

Postby Beep on August 29th, 2002, 9:48 pm

Hey, I've been waiting to get back on the forums so I could pass on what I've discovered. I've been using a new supplement of chelated copper. While doing research into supplements for my son's autism, I discovered that copper is necessary for proper nerve functioning. I had been getting copper in my daily vitamin, however, it turns out that zinc will bind copper so that your body cannot use it. Zinc was in the vitamin too. Also I had been taking a zinc supplement . According to my source, taking zinc can make you copper deficient in as little as one week. I altered my routine so that now I take my vitamin, a copper capsule, a calcium tablet and my antiviral med in the mornings. You must take copper with food or you will throw up. Trust me. !! In the evening, I take a second calcium tablet and the zinc supplement. My twitches, fasiculations, tremors, and the buzz are all but gone. I only get the mildest of fasiculations in one leg and that leg is the one with permanent nerve damage from a ruptured disc in my spine. I have to be very still and observant in order to notice anything. I hope this is useful information for the rest of my fellow sufferers. After four years, I thought I'd never feel this calm again. It's wonderful. Please, somebody else try this and see if it's just a fluke or if it really helps. I'm taking Copper Caps, chelated, 2 mg, by Twinlab. It's an over the counter supplement. Let me know if it works for anyone else.
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Copper

Postby DaveKD on September 3rd, 2002, 3:22 pm

Beep - After reading your post I picked up some Chelated Copper 2.2mg tablets on Saturday. I have been taking them since and I do feel like I am twitching less. Maybe it is the placebo effect, but what ever it is I'll take it! Plus I read the monograph on Copper at CVS.COM (A local Pharmacy chain) and it sound like a good supplement all around and they mentioned the same thing about the Zinc interaction. They also said that taking large dosages of vitamin C for prolonged periods can deplete your body of copper. :)
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Postby DaveKD on September 5th, 2002, 8:01 am

UPDATE - Well I think it was placebo effect as I am still the same. But the good news is that it has reinforced my support for mind over matter with BFS. If you obsess and let it rule you as I sometimes do you will twitch more, if you say screw it I am fine, you twitch less. That much I know for sure! :D
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Postby Airmade on September 9th, 2002, 1:04 pm

Hi Beep!
How are you?
Does the copper supplement still work?
Can you update us? :P
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Postby Arron on September 9th, 2002, 1:23 pm

if BFS was a simple as a defiecency in something as simple as copper, it would have been discovered by now. Most of us have had CBC's as soon as we first went to the doctor and that kind of stuff shows-up in panel 7's, CBC's and all of those kinds of blood tests. It isn't as simple as that. Good try though, you get an A for effort. I didn't want to post on this thread because I really had a strong feeling it was the placebo effect at work as it has been in ALL cases we've seen so far. There is no single answer to getting rid of this BFS stuff and the main thing to keep in mind here is quit trying to knock yourself out trying to "cure it", it's BENIGN, so there's nothing to worry about in the first place. Hang in there and be thankful that it is only BFS and that it is benign. EVERYBODY has something going on with their bodies. I'm thankful that mine is benign.
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Postby michelle on September 9th, 2002, 3:03 pm

I must admit, that I bought the copper too. I haven't started taking it yet, but I wanted to try ANYTHING that may have helped someone else. Sometimes we doubt the diagnosis of BFS and who knows, are doctors may not have tested for EVERY mineral/vitamin deficiency. Arron- I agree with you view, I too am glad that this is non- life threatning, but still, sometimes you wonder what is *really* causing this. Wouldn't it be great if it was something as simple as this? I guess we can keep trying ;)!

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Postby Arron on September 10th, 2002, 10:41 am

Oh of course. I guess I have read SO much on all of this and have talked with SO many people I have seen just about every test that has been done, including Copper, but like I said, I didn't want to burst anybody's bubbles and I know all too well how powerful the placebo effect can be. Just remeber, your body has more circuitry in it than 10,000 computers. You have "wires" so small and so fine that they can't even bee seen and can't even be operated on with micro surgery and with all of that, there is bound ot be some people witha little "crossfiring". It doesn't mean your hard drive is bad or your main frame is going to become none useful, it simply means that there is a slight "glitch" in the system.. no big deal. How many of you have computers with some sort of glitch every now and then? It doesn't mean you can't use your computer anymore or that it can't function, You just learn to work around it, that's all. Well, our body's wiring is very similar only WAY more complexed and it is all suspended in fluid! What do you think would happen if you pioured "fluid" in your computer? It would short-out! Well, we are SO complex and SO well designed that we can do everything without shorting-out, but some of us have an occasional glitch.. no big deal. I think that might make it seem simpler to some of you out there and in a way that you can relate.
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Postby Beep on September 12th, 2002, 11:21 am

Hey, this is Beep. Been reading all the replies. I have to agree with all of you. I mean, I still have the twitches in my leg and I noticed a mild twitch in my tricep the other day. However, I'm still experiencing far less twitches than I used to. Perhaps, my reaction is a combo effect of all my supplements. I do realize this is benign and I don't worry about it like I did in the beginning, but I do want to do what I can to never experience the constant twitching, buzzing, and trembling that I had there for awhile. It was awful and all of you know. I can definitely live with what I have now and even ignore it. I'll still keep taking the supplements and if its placebo, so be it, its been working for me. I'll take anything I can get! I've been taking the copper for about a month and a half. I want to give it a bit longer. I still believe it is having an effect. Best wishes to all of you and thanks for the input. I reallly appreciate it.
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Postby Nole on September 17th, 2002, 9:44 am

Hey all,
My symptoms are barely there for over 2 weeks. Very minor twitches. I take centrum multivitamin and keep my mind off of it and I dont even remember that I have BFS. It is wonderful. When I am stressed or tired I will think about it more and symptoms may return but just goes to show you that much of this syndrome can be controlled with your mind. Keep doing what you love, find the root of your stresses and confront them, and find a way to relax.
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Postby Debbs on September 17th, 2002, 11:08 pm

Beep I read your post and I just wanted to say.....I think its fantastic that you are out there trying to find an answer to your bfs, we are all fearfully and wonderfully made and different things work for different people...If its working for and you have results then its obviously what your body is needing so go for it !It is so nice to have a success story in here. I fully believe that our bodies lack the proper balanced nutrition it needs, we have so much processed foods out there that the content of vitamins and minerals is sadly lacking.Im all for supplements, I had some blood work done and found my magnesium levels were low, Im using it and it is working for me, I also take calcium and vit C and a multivitamin on a daily basis, along with excercise to make sure Im doing my part to keep healthy, and I do feel better much better. Good on ya Beep!

take care Deb
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Im feeling great!!!

Postby Nole on September 27th, 2002, 11:52 am

Just wanted to share my good news. I have been feeling great for weeks now. Very little twitching and I feel as though I have my life back. I have totally stopped worrying and have learned to live with them and you know what ??? The twitches are so mild now I barely notice them. I take a centrum everyday and am eating better, getting more rest, excersing and doing the things I love. I am also learning to deal with my anxiety, and keeping my stress levels down. That really helps. Keep thinking positive it gets better with time and patience!!
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Im feeling great!!!

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