How I Cured my BFS (Benign Fasciculation Synd) within 1 Year

[SecretAgentMan]

I actually do believe that BFS is able to be recovered from in everybody. I believe the problem lies in the approach of our medical 'professionals' that most people look to as the 'experts'.

[aztwitchy]

So today I had my third super painful emg done. It's been 4 years for me already. Many good days/ weeks and many bad days:/ . I asked the doctor that I saw today which was a neuromuscular specialist if food can affect my twitching and she said " I don't think so" basically she didn't know anything besides that my condition is bengin:) I'm not sure what to think and in what to believe. ImI afraid that there is no available help from western medicine...she told me to live with it

this is where western medicine fails.....they refuse to acknowledge the strong connection between diet and inflammation. Its not a coincidence that once I went to a plaeo style diet that i got control of the mess I'm in. Diet changes recommended by Burger and adjusted to my individual body accounted for a biggest change for the positive I have seen.

Western Medicine(cation) got me nowhere but instead dug a deeper hole and siphoned money from my accounts....I tried 6 different medications prescribed and they all failed miserably. Western medicine has too many eggs in the drugs basket imho. The reason she didn't think food would affect twitching I imagine is due to the fact no drug company paid for a peer reviewed published study on it.

[BFSBurger]

I went and saw Dr. Klimas office (specifically Dr. Irma Rey) ...

They ran a bunch of immune testing on me which will come back in a couple months.

She also ran her battery of tests for active infections not currently being subdued effectively by my immune system.

She said my Cytomegalovirus IGM is still positive, however it had dropped drastically (directly in relation to my symptoms doing better) from before.

She said I am showing positive for Coxsackie B virus - I think she said versions 7, 16, 18, and 24 .... (18 is the one I cant recall exactly)

She said this is a virus that invades the intestines and causes havoc. Maybe some correlation with the food sensitivities and subsequent twitching illicited by them? I dont know.

That is her take though, as an immunologist. She wants me to take Equilibrant, which is supposed to "clear" coxsackie virus. I asked her "Is that an immune stimulant because I don't tolerate those well at all" she said "Yes but you're only going to take a small dose". Hmm. ...

Its nice to have a doctor looking for things for once. Thinking outside the box. And she isn't a naturpath so I feel good about her extremely legitimate ties with the medical world here in South Florida. A little iffy on taking something that an asian fellow created out of some herbs for his son ... but you never know.

The most significant thing is that she says its an intestinal invader, and we all have direct intestinal influence on our symptoms.

I guess ill "listen to the doctor" this time and give Equilibrant a try. It seems my CMV is resolving ... very slowly.

Have *any* of you been tested for these things?

-Burger-

[BFSBurger]

Ahh.. and then there's SuziQ ... who was so helpful to me when I first got here. Looks like Coxsackie B virus came prior to her onset:
viewtopic.php?p=66082#p66082 (note 4th line of text).
Is it NMT? Maybe Is it Coxsackie? Maybe. Is it CMV? maybe ... Is it "Stress" ? (NO!) lol ...
I guess I'll try the Coxsackie treatment and report back.

[chicagobfs]

Never was tested for that. What's te deal with that Herb medication for a son?? Didn't get that

[BFSBurger]

Dr. Chia - a doctor coincidentally also in south florida ... is kind of famous for his work with enteroviruses. He has done a lot of research in that world, and coincidentally his son ended up with clinical symptoms matching Coxsackie. At the time nobody knew what it was however. He tied everything together, and put together some treatment regimen which has been shown apparently to cure or suppress Coxsackie once and for all in a large percent of people. Its the Equilibrant. And you've got doctors like Klimas and Rey recommending this stuff since there really is no treatment for Coxackie aside from anti inflammatories. Which ... by the way ... there's that same exact theme again. Anti inflammatory. The very thing all of us here who are successfully feeling better, are focused on. In fact the owner of the Isaacs / NMT boards recently posted new data showing that NSAIDs may benefit Neuromyotonia. .... hmm. Wish someone would have suggested Aleve to me back when this started an d my entire body was inflamed. Rather than tell me to "sit back and let it do its thing, and jusuuuuuuuuuuuuusst stop stressing over it". Idiotic advice...

[SecretAgentMan]

BFSBurger, I'm happy you are pursuing your passion here and posting the info you find for all on the board to read, but you can be just as effective without the negative commentary on stress management posts. While I do not believe it is the only angle people should be working, I (and many others) do believe it to be a very valid angle for people to focus on. BFS is after all a multi-faceted condition where no two people seem to experience it exactly the same. No matter how promising the leads you are finding, they are not the universal truth for all. It would be a shame to discourage someone from pursuing an avenue that may indeed positively benefit their condition.

I actually believe more people would take your advice seriously if you were to refrain from the negative sarcasm and insults towards views you disagree with. People are inspired and motivated by positive commentary where there is room for multiple views. Negative comments are divisive and polarizing. Please consider focusing on that which you agree with and leaving that which you disagree with alone without judgement. Thanks for the update.

[BFSBurger]

I am entitled to speak negatively about advice and information that can be mentally, emotionally (and yes) physically damaging to people. And that is all I'm doing. I was not saying that its dumb to reduce stress, for symptom management. I was saying its dumb (and potentially dangerous) to blame people's health problems on their own inability to relax.

Have you taken a moment to truly think about the ramifications of such a statement? How it can affect the psychological state of people who come here? The result of blaming everyone for their own health problems?

Do you have any idea why everyone here is so freaked out compared to people on the Isaacs boards? They have the exact same symptoms we do. Many times much worse. Their symptoms react just like ours do, to stress. Yet why are they so calm over there? Because they have a diagnosis. Because they know they are not at fault for what is happening to them. They aren't trying and trying and trying to adjust their brain and body, to attain a self-cure. A differentiation must be drawn between stress as a symptom reduction and stress as a "cause of BFS". I drew that distinction above, but maybe it was missed.

I will get "righteously angry" towards anyone who tries to tell people here that their health problems are their own fault. And that's all i was doing above. Telling people "BFS is just stress" is akin to telling them its their fault. Because of the damage this does to people psychologically, it should be condemned. This isn't about "respecting other viewpoints". This isn't a discussion on religion or sexual orientation. Yet even in the event that a religion hurts people, people are entitled to speak out against it. Even moreso with a neutral topic like medicine.

I speak from my own experience. And discussions with others here. Spending several months being told to just sit back and relax while "whatever this is" took over my body.... was a source of frustration and a lot of mental torment for me. Not to mention bad medical advice. Go look at my thread "SOMETHING IS NOT RIGHT" viewtopic.php?f=4&t=18415 That was my worst day in the last 12 months. And not because of BFS. It was my worst day because of the indoctrination I got here that I was at fault for my own symptoms. That day was utter hell for me emotionally and mentally. Because of that "viewpoint". And it was wrong.

Saying "Something is Not Right" was my polite way of saying "This isn't benign. It may not be deadly, and it sure as heck doesn't look like ALS, but its not me. Im not causing this. I don't need to relax. Im not to blame. And my brain is all twisted right now because I bought into that nonsense, yet my thighs are ON FIRE!"

As you can see from Mario's response - basically telling me to stop researching the cause, and just "relax" - i reached a tipping point mentally and completely lost my sh*t on him. That's because I was sick and tired of being told this was 'nothing' other than my own doing. So destructive. So I feel bad for others here who fall prey to that thinking and end up in an endless cycle of unresolved symptoms, self blame, and a dead-wrong (lack of) diagnosis.

There are a thousand things this could be, and paraneoplastic is just one possible option. To tell people *not* to monitor for such things is such damaging advice that the ultimate price could be paid for it. Yet you want me to just say nothing. Even Greg at Mayo was run up for Paranepolastic issues. They gave him a full workup. Why? Because Mayo knows their stuff, and that is responsible medical advice, considering our symptoms. Telling people to sit back and chill out, because "General Anxiety Disorder" is the cause of their health problems, can be dangerous.

I think a lot of people here are tormented because they try stress reduction and it doesn't make this go away 100%. There are a couple people here who think General Anxiety Disorder *is* the cause of BFS. I think it is very important that people know that stress isn't the cause, and therefore reducing it wont be the cure. Why am I snarky and sarcastic about it? Because I think it damages people. I think it leads to frustration and dead ends, as people blame themselves for their "inability to just relax". This places the blame squarely on them for their health problems, and that is destructive advice.

I think I have already established with (literally) hundreds of posts that reducing inflammation, and stress, will help symptoms decrease. So Im not sure why I am even having to write this. But I will retain my right to speak out negatively towards the sentiment that everyone here is at fault for their own BFS. And that they need to just relax. That sentiment is idiotic in my book, and I will continue to sarcastically say so. But thanks for your input.

-Burger-

[SecretAgentMan]

I've got it now. You adamantly disagree with the advice of 'chill and don't do anything else' while I interpreted you as being against stress management having any beneficial impact. The distinction was lost on me in the last several posts I've read of yours, so my apologies.

I am a little perplexed at the distinction you are making however regarding a diagnosis of Isaac's Syndrome and a diagnosis of Benign Fasculation Syndrome. Why is Isaac's Syndrome a diagnosis but BFS not? Neither is considered curable by western medicine, so what is the logical or psychological reasoning behind why IS diagnosed people are calmer than BFS diagnosed people? I'm not trying to be a smart you-know-what here. I genuinely want to hear your opinion.

[MarioMangler]

I also disagree with the belief that everyone here is freaked out. Newbies are freaked out, sure, but newbies are freaked out on any health or anxiety board. The basic premise of aboutbfs.com is that you cease being freaked out and then you lose interest in posting all the time. But there are far more people here who have adapted to bfs and have learned to deal with it than are still freaked out.

I still offer the same advice to newbies as I have always offered. BFS is annoying but there are much bigger things in life to waste your time stressing about.

[chrissi]

Well as everyone knows that I am one of the persons on this board that is bringing across her doctor's 30year experience working hypothesis that BFS/ Fibro related conditions are a permanent manifestation of a constant fight and flight mode that cam be triggered by various things ( including anxiety, stress, virus or immune reactions) , thank you calling me mentally, emotionally and physically damaging to people and showing a dumb and dangerous behaviour. I just got a whole load of PMs and emails coming back from vacation and referring to this thread I actually never wanted to visit again, because they now think they have cancer. I wrote them what I told you personally before: no known diagnosis of cancer on this board since 2002 within 4000 members. Of course we are not in contact with every oldtimer, but I have been told by veterans that there are quite regularly people digging up their old stories ond contacting them via PM, to see if they are still OK. And they are. If you want to be scientifically, then make a statistic on this board and see,what percentage on this board got cancer within a tolerable time for a paraneoplastic syndrome, and then , in case that the number of cases of cancer within the BFS community is statistically significantly higher than of the overall population, you can discuss a general advice to get tested for cancer with the mods on this forum. Which I know won't happen, because I have talked to uncounteable long time members on here, and many are still in contact with other members that joined at the same time, and still yet have to hear from one case of cancer. One could almost getbthevimpressionthat BFS is a protection shield for cancer, but then we know that BFS often strikes quite young people with a healthy lifestyle, while NMT or paraneoplastic syndrome ( which btw usually come with hyporeflexia ( so it did in our members with neuromyotonia dx due to EMG), while BFS usually comes with hyperreflexia which is a typical reaction for an generally exaggerated fight/flight response) usually strikes at a higher age.

[garym]

I feel the need to weigh in on this subject a bit. First let me say that I don't believe that anxiety caused MY bfs, but I don't discount the effects that chronic anxiety and extensive adrenaline can have on our bodies. In the end, anxiety and its effects on the body can wreak havoc on our system......but, after years of bfs, dealing with stress and anxiety haven't cured my bfs. As for the cancer relationship to bfs, if one actually exists, it is extremely rare. I have seen one study, years ago (i haven't looked for years) that linked fascics to lung cancer. Worried about that because both of my parents had lung cancer, I took the study to my pulmonary doctor and asked him to review it. He was shocked to read the study and told me that he dealt with lung cancer every day and had NEVER seen twitching as a sx. I have been at this for years and I have never, not once, seen a case of cancer causing fascics on this board. So while anything is possible, cancer causing you fascics appears to be a very, very rare possibility. Definitely not any reason to panic about, and if you are worried about it simply ask your doctor. If they are anything like mine, he/she will probably laugh and rx a good anxiety drug...........which controling anxiety is in my opinion the first step everyone here should take in dealing with bfs. Once the anxiety is under control, people can take an objective approach to their health care/treatment for bfs. Finally let me say that I 100% support people that want to take a more proactice approach to finding a solution to their bfs. If a person has the want and desire to search for answers, why shouldn't they? I've been there, and found no good answers to cure my bfs, but why should anyone be discouraged from looking for answers? I would just suggest that we don't discount anyone else's ideas/thoughts on the subject.

Take care,
Gary

[chicagobfs]

The problem with the BFS diagnosis is that it doesn't feel like a real diagnosis. To me it's just a lame name for something that nobody knows why if happens. I'm not sure about Isac syndrome ( since I don't google diseases) but it does sound like a properly "named" syndrome:) I have to say that the advise to wait and relax is probably good for new members with high anxiety. However, what do you do after one year? Two years? Four years? People can adjust to everything and that's why many of us can live their lives normally. But the truth is that I still have same symptoms as in year one, the only difference is that now I don't overreact. In my head I have a memory of that "twitch". It looks like with time we are agreeing on doing nothing. Secretagent on the other hand didn't do nothing, quite opposite. Thus, burger you and him are quite similar in your actions.

[chicagobfs]

Also Chrisii I sense that you took too much on yourself. It seems like your are emotionally overwhelmd with all these requests from people. You are a great help to everybody on this forum but I'm afraid you can't "save" everyone. I do believe that majority of questions asked are already answered, just use search option people!!

[chrissi]

I actually do this a lot if you read my later posts, sending people to the search function because there's no sense in answering the 100 millionth twitch question. It is also not even important to discuss different views on the possible origins of BFS , as long as people understand it is benign. But apparently to many people on this board, cancer fears are a big big issue, and they were very concerned. In this case I try to answer, because the least thing people pn this board need is one more thing that causes them anxiety.