Welcome Disagreement with Respect

To all:I welcome anyone who disagrees with me. I talk to Chrissi and others by Skype daily who don't agree with me. But there is a mutual respect. Nobody follows the other around, intentionally discouraging people from listening to them. I let others post. They let me post. That's how a community should work. Unfortunately, I've had to deal with months of JohnnyRocket going out of his way to not only discredit everything I say, but discourage people away from things that are dramatically improving their symptoms. And that's where his behavior has become a detriment to this forum. For whatever reason, he doesn't like me. He has sent me a PM mocking me at one point out of thin air. Others who type the exact same thing I type get no such harassment from him. Its only me. I put the guy on ignore. Tried my best to continue participating here. Unfortunately his trolling has become too frequent and too pervasive. He's terrified people will view me as credible. And I'm quite simply done putting up with it.My anger stems not from being contradicted. But because I know this stuff works, if its done correctly, and he would rather discourage them away from it out of his fear that people will report positive results, and view me as helpful. That's twisted and weird dude. Seriously. We are talking bout what is working for us, here and now, and that should be respected. Leave people alone. Most of you realize that I only want to help. And I don't care if someone doesn't like me. I don't care if someone disagrees with me. But when you know a technique is dramatically improving quality of life for people, and you discourage others from trying it, simply because you don't want the proponent to be viewed as credible, then you are *harming* people. I honestly don't have time for such nonsense. I don't come to this board to engage in popularity contests. I mostly want to be left alone. So I encourage all of you to listen to ChauBao, Secret Agent Man, Aztwitchy, Seventhcandles, and all the others who write the same things I do, yet whom Johnny has no personal agenda against. Not surprisingly, he lets them speak, though they speak the identical words that I do. Please listen to their input on inflammatory foods, moderate physical therapy, and stress management. I truly believe your life will drastically improve if its done properly. I'm done casting pearls ... I wish you all the best of luck. I'm done on these forums. Congratulations Johnny. Mission accomplished.TwitchBFS

I agree that JohnnytheJet is the bane of this community. For 8 years he’s been terrorizing newbies in this forum one by one. He haunts their every move, tracking their location as they move from topic to topic. At work, he plots out grand schemes to hurt their feelings and make them feel so unwelcome they want to leave. BFS has turned him into a monster with a hunger to haunt that can never be satisfied!!!....or something like that.With high anxiety and BFS at work, drama always pops up on these forums from time to time over the years and typically I’m on the outside looking in, but this time I drew the short straw. Lucky me.Also, these “I’m mad so I’m leaving” posts come about every so often and if I learned one thing……they almost never stick. Burger, you’ll be welcomed back whenever you feel ready. We’ll still be here waiting for you.P.S.- While you're entitled to an opinion, sending me a PM calling me low class, ethically absent, loser, as well as profanity I will not repeat publically .... without even letting me reply (by disabling PM's) is as low as it gets, bro. Not that I'm too surprised, but I did actually more of you than that. I hope the mods delete this thread along with the others which display your knack for making everything personal with me, because this drama is unwarranted. Although, maybe leaving it is worth while as it provides an accurate depiction of your character. That being said, I'd wish you goodbye but I have no doubt you'll grace is with your presence in the future. Take care.

The only thing that sucks more than BFS is forum drama...it discredits the thoughts and opinions of people when things get personal. I'm not going to take sides here, but I will say that I value both Burger and Johnny in different ways. Johnny was of tremendous help to me in my early days when I thought I was dying...he let me ask him question after question about my bfs symptoms and never once criticized me for my high anxiety back then. And Burger was there very intensely from the beginning opening up the vault again as to what might cause bfs and how we might possibly cure the symptoms. His theories make a lot of sense and are well thought out. Can't we just call a cease fire here or something? Can't we all just get along?

In the beginning, there were a couple of people who were god sends for me. Johnny was one. 'Nuff said.

Johnny always gives it to you all straight which is a good thing imho. Sometimes the truth hurts but the fact is we all have a condition that nobody knows for sure why it happens or that there is any one single thing that can cure or even relieve it. So what most of us old timers agree on is that you have to learn to embrace it and live with it coz its now part of you. After over 7 years of it, it might be easy for me to say this now but you have to just blank it out and get on with your life. Take notice what your body is telling you and find your own ways of coping with it etcAll these medical theories are just that, an opinion of what someone thinks is their cause of BFS PNH etc , but hey ive been around long enough to notice that people here are different to me, we are all genetically different and individual. No one here as an identical forum twin who they can say "hey are you me?" your onset, emg, bloods etc are identical to mine etc FWIW Its always going to be our own individual BFS PNH journey so best sit back if you can and relax, enjoy the ride as it could be long haul. Please don't waste your precious time thinking you can cure us all because you cant, spend that time enjoying your life doing things with your family and people close to you as these are your sanity and your saviour.

As a newbie, I have to say that I've found a lot of help and comfort in both Johnny and TwitchBFS's posts. I hope they both stick around and keep contributing so future sufferers don't have to miss out on the benefit of their additional input.

Johnny is awesome, in all my years on the board he has never acted in a way that would suggest he doesnt care deeply for each and every member who is in troubled waters with their affliction.Food my cause bfs and it equally may not. It may for one and not for another. Noone on this board knows and imo criticism of theories should be allowed and encouraged.

Johnny, You pretty much proved my point right here:You completely disappeared from that thread when I left. You left everyone alone, because i was gone. Two full weeks?Within 1 hour.... of me posting back in there....Guess who shows up and starts talking smack about the diet thing again? Out of thin air.Stop stalking / harassing / trolling people on here dude. Grow up.-Burger-

Hey Burger-Thanks again for the dramatic, "I'm hurt so I'm leaving" topic to bring attention on yourself. It was wildly entertaining, among many other things. We welcome back your BFS related comments, and hope the tears and personal drama can be left behind.My Inbox is still open as well if you need a place to send more profanity-laced private messages.

Burger,This forum is a great place for people to share their experiences and help each other get over this crap that we all share. But coming on here and telling people that you have the cure and then copping an attitude with those who say that it didn't work for them is not helping anyone. I know for me personally, I've been helplessly trying to find anything that will reduce my twitching. I flew out to the Mayo clinic to see if they find the cause. I've tried all kinds of meds from Klonopin to Tegretol, to natural remedies, Epson salt, you name it. And ofcourse, I thought that maybe this was my body telling me to change my diet and put myself on a very strict diet for a long period of time and was extremely frustrated when it gave me no relief. So when you came on here and told me that I 'did it wrong' and questioned my methods, I lost all interest in reading your posts. I've been on this forum a lot longer than you have so maybe you don't realize that Johnny is one of the most respected members of this community. So this nonsense and drama that you continue to spew on here is getting old. I know I speak for a lot of other members when I say give it a rest dude. -Matt

Burger, I knew that peace from you won't last long. You see I run a forum on my own in my country (not BFS related) and I knew when someone is shouting out loud how they will leave the forum, they NEVER leave. The ones who leave don't yell about it, just leave.Your every day different solution that works is some sort of harrasment on this forum. I think you have must bigger problems that BFS (if you still have that, I don't read your posts any longer). You should have your ego lowered, it would do you good.Take care

I can't believe everyone is giving a burger a hard time, with his Phd's in nutrition and Neurology, all he is doing is bestowing us on all the information he has learned in his years of study.....oh wait.....Advising people to strictly follow your diet and supplements can be dangerous man...especially when your not qualified to give that advice. Just like i'm not going to give anyone on here legal advice.

To support what Johnny is saying, you can find several posts on this board where members think that wheat or gluten free diets actually CAUSED their twitching or made it worse. So ofcourse, going on these diets and making healthier choices will benefit all of us in some way. But will it cure us of our twitching? I'd bet my house on "no". After being on these boards for 2+ years, I can tell you that we, as a community, have absolutely no idea why we are twitching or how to fix it. I'm not saying don't try the diets, I'm just trying to manage expectations. I want to avoid people on here thinking, "Wait, if BFS can be cured by diet and it didn't work for me then I must not have BFS." Thats all. -Matt

That's such a good point, Matt.I think that's all that Johnny's trying to do as well. It's really warning the newbies that diet may or may not help, and if it doesn't, don't worry - it's still BFS and nothing sinister.In my case, I was pretty deflated when I tried going gluten free, grain free, avoiding nightshades, cutting out caffeine, etc, and I still twitched. Nothing in my diet has made any difference (except when I drink a few glasses of wine, which significantly reduces my twitches! LOL...).That all being said, I think it's definitely worthwhile to try modifying your diet, since it has been successful for some, if you haven't tried it already. You have nothing at all to lose by trying, if you have the right expectations.I deeply believe that while we all twitch, the underlying reasons are not always the same. For some it could be food sensitivities, for others it may be some viral process that affected your nervous system, for others it could be extreme stress that needs to be conquered.I know that despite my twitching, I don't regret being on a gluten free diet (that I've been on for 2 years). It helps in another areas significantly (e.g., IBS).Mitra

I suppose its hard for AZtwitchy to actually read what is being said given the fact that his nose is planted firmly in Burgers behind (metaphorically speaking of course, not a comment on someone's sexuality, before i am accused of a hate crime)

There's a lot of negativity in this thread and I honestly don't see this serving anyone's higher purposes for coming here to this forum. Yes, we are all different and have different personalities and sometimes these personalities collide or clash. Debate can be healthy but it's getting a little cold in here. If two people in here have a disagreement it isn't going to be settled by having people pick sides over who is right. That will only fuel the fire and most likely drive some people away. I'm not sure any of us really want that, do we? Can we please move on and just let this thread die?

giving advice on supplements and diet? sounds like nutritional advice to me.giving advice on what has worked for 100's of twitchers, and worked for me personally which is basically IGNORE it and it will go away ... common sense, and what hundreds of neurologists have told members here.

Im trying to decide whether or not i should chasitise you for giving financial advice now because of your mention of the bank, i'm an equal opportunities d1ckhead and believe in berating everyone equally.

Its sound advice as I have broken down the numbers.Trust me, I'm an engineer.

Ugh. I wish you were wrong, Mitra, but you're probably right.